Saturday, May 29, 2010

SOOC Saturday The many reasons to be hopeful

One of R’s therapists is expecting a baby

And has the worst morning sickness

“Who made the term morning sickness.. a man probably ..its all day everyday” she grumbles

As R, the human Prozac, holds her face in his hands to kiss her, her mood changes and she says

 “ It will be all worth it one day though.. one day when I have a child like R”

A child like R !

Not something a mother of a special needs child gets to hear ...ever

In the early days of our autism-life,   we would ask everybody for a prognosis – neurologist, psychologist, earlyinterventionist, person-who-knew-any-autistic-people-ist, mother of auties etc – as to what the future looked like for R

It did not take us long to realize that nobody knew

In fact, we were the ones that R’s world looked to ,

To describe R,

To know his worth

To predict his future

And so we chose the contended road

Chose to look at all of R- not just his problems

Unabashedly boasted about his strengths

Ruled nothing out

It has been the single most important choice we have made as parents and is the source of our happy  family

Further, It has been the most powerful therapy that we have used

For R in the glow of our adoring gaze is simply  blossoming

Last but not the least, his teachers and therapists , are infected by our hope and faith in him

So much so

That someone wants a child like R

Here is R giggling with a therapist who uses this picture as her facebook profile



Lovely Melody asks us to share something that makes us happy

And the love he gets from those that don’t have to love him but still do - makes me so

On her site you will meet her and other bloggers who share bits of their happies

Thursday, May 27, 2010

Occupational Therapy Evaluation

We finally had a good private OT Evaluation.

This is a boring post that is really not worth reading except for those with kids with Sensory issues .

 Plus these type of posts are a good way for me to record our journey

DH and I often talk about how much Sensory Integration Disorder contributes to Autism symptoms.

He gets some OT from School but I have no idea of how useful it is

One thing I loved is that the OT evaluator wanted only the parents present at the Evaluation as "she does not want to talk about him in front of him"

Right then, I knew that she was someone who respected the child – very important criteria for us in selecting therapist.

Another astute observation from her - She had asked for eval from class-teacher and from DH.

She was very surprised that they came in right on top of each other. Usually most parents rate their child much more above their skill level than the school rates them. She concluded from this that his school is probably a place where he feels good and comfortable – this is true and quite an astute observation )

She commented several times on R's smartness and his sweetness and charm
.
This I loved – we really love therapists who look at  his strengths and not just weaknesses .
Her close friend is R's speechie and she talked about how speechie says R is her favorite Client in all the students she has ever had in her career ( high praise – how I love our private speechie )
She basically passed the three criteria that DH and I hold dear while selecting people who work with R
  1. Respect R
  2. Know your stuff
  3. Look at the complete picture of strengths and weaknesses not just at all the things that need to be "fixed"


Here are some main things we discussed
  1. Definitely qualifies for diagnosis of SID ( no surprise there )
  2. Hand dominance
He uses his right hand for writing – but does not have a fully established hand dominance just yet . however hand dominance needs to be established as usually it happens at 3-4. His brain needs to treat one hand as manipulator and one hand as stabilizer. She says he would probably be right handed as neither me not DH nor Grandparents were left handed

3. Crossing over the midline
Problem for R – she gave example of how this can be a problem for many kids ( the kind who write on a table – sitting sideways and not facing the table ) Will be very important for doing things like riding a bicycle , drawing things that come together ( like squares and rhombuses ) . We talked about how difficult it is for R to ride a bike when he does not have gravity helping him . I wondered aloud if he has " strength" but her hypothesis was that this midline thing contributes to it and maybe he just does not understand what to do .
She gave an example of "Big Wheels" as a sensory strategy so that the wheels would be right at his eye level and he could " see his feet"

4. Visual  Issues

she said that she would work at his eye level. That is instead of putting pen and paper on table she would ask him to write on things that were at his eye level ( example on the wall ). She showed us an example of him imitating a circle, a cross and a triangle while sitting on the table ( just squiggles ) and after placing paper on wall ( all perfect except for triangle)

5. Cutting Skills

She was big on scissors and on zoo sticks ( kind of like chopsticks but fatter ) and using salad tongs etc to develop pre-cutting skills

6. Other Sensory strategies
  1. She also talked about Wilbarger brushing and joint compressions and was big on it and said she would teach DH how to do it and give us a 3-times a day schedule. When we said we had one – she said it was VERY impt to keep it in a zip-loc baggie ( which we don't) otherwise it gets hard and can hurt the child. She said another interesting thing - oversensitive hands co-exist with oversensitive tongue. Kids who are squeamish touching things are also squeamish eating things. So you could reduce food-pickiness ( which R has in spades) through Wilbarger brushing.
  2. She asked us about the pressure vest ( we also have this but don't use it much as we saw no difference) She mentioned that even this was very important to do on schedule – an hour on and an hour off – for sensory modulation
  3. Instead of on the table – she talked about how to have "fine motor stations" throughout the house – she showed a small tent she has – which focuses attention as soon as you go in there to work with the child
  4. We gave some suggestions on some tactics that work well with R – music , loving and gentle manner, lots of praise and Junior mints
  5. She hesitatingly "broke the news" to us that in fine motor terms R measures at 25-30 months( less than half his chronological age ). I think she was concerned that we would be hurt. This however was no surprise at all and we took it in our stride with no fuss
We start private OT next week with her and are really hoping it will help R .
 
Keeping fingers crossed that insurance covers this

Monday, May 24, 2010

W/O May 17 Bits and Pieces

I have not had any time to write these past few days  so here are just some bits and pieces

School and Summer plans

School Is over .

We have a program on for summer with Speech , ABA and some pretend play and hopefully OT - but not too much -

Also I find that in the Summer due to people taking vacations and such the schedule gets even slacker than normal

R is on a bit of a plateau - but like his therapist reminded me he always flatlines a little bit before having another developmental leap so I am trying to be patient

Example he will write things on the side of a bathtub ( here he has written 5 little monkeys )  but wont play word games with me



His gran who loves him to bits asked me the other day about  how much autism R has ?


Her close friend has 3 grand kids ( all girls - all with autism )

She had spoken to her on the phone recently - they are now 11 and 13 and 2 of them no longer test on the spectrum

I suppose she thinks R will be the same ( and he may of course )
But I answered honestly that R has a lot of autism - of course he also has many many strengths which will serve him very well
 
I think a lot of the Autism game is set up with two options in mind as success criteria  -
 
One is recovery ,
 
Second other is internalizing a belief that Autism in itself is a good thing
 
DH and I are now in the stage when we simply dont think in those terms anymore
 
Its  all about having a happy and contended present(  and I would argue that we have a very fortunate life- full of love and gratitude). And about making sure that R has the best shot at a happy and independent future.
 
Still we are in a very different part of our Autism Journey  than R's extended family
 
Work
 
Is simply mad these days .. gone are the days where I had time to take for lunch.
 
I am only getting this time to blog ( after a long day of a work trip  ) as I am in a hotel ( missing DH and R quite dreadully as the last time I had stayed at this W - they were here with me )
 
I am not complaining about work though -
 
I love research - 80% of the job is back-breaking hard work but the 20% makes it all worthwhile -
 
I love psychology -
 
I often wonder at all the dramas that play out in people's homes. 
 
Sometimes when I have my researcher hat on - neighbourhoods look like dollhouses
 
If I could lift the roof of each house - what story would it contain?
 
If ghosts exist - do they enjoy being able to see these stories or do they wander about wraith like disinterested 
 
Do you wonder?
 
 
Trip To Athens, GA
 
We take a weekend trip to Athens GA - where both DH and I have graduated from ( many years ago )
We wander around campus taking pictures
R sits by the fountain and has a great time
 
 
At the end of the day after I have put R to bed - MIL stays with him and DH and I go out for  dinner
 
There sitting on  chairs on a restaurant that has  pavement seating in downtown over wine and tapas - I feel all my weariness slipping away
 
These   couple of hour is literally the best bits I have had in a long time
 
Bad picture but its with UGA so I had to put it up !
 
when we get back MIL tells us that R has been  waking up every 30 minutes whining and I snuggle him and go to sleep with him
 
IKEA
 
Here is one ambitious plan for the summer
 
R is to sleep by himself !!!!
 
We have bought a bed - wish us luck !!!( picture from IKEA store - we will obviously have a more R-preferred theme )
 
 
 

Saturday, May 15, 2010

SOOC Saturday :The beautiful people

On the day you find out that your child has special needs

Its like you have been forever banished from the land of the beautiful people

( “Beautiful people “ is a term coined by my friend D – these are people with “Normal "lives - those with the 2 kids who excel in school and soccer, the picket fence, the SUV,  the doting husband )

The day that you find out , cleaves you from the rest of the world, as sure as if a line had been drawn and a giant hand picked you up and  put you on the outside of that line

Now there is a them

And there is a us

We cope in the ways we cope

We reincarnate several times

Warrior mum

Therapist mom

Pioneer mom

Team Manager Mom

Sad mom

Guilty Mom

Scared Mom

Some time we are all of these moms ( or dads)

But all the time, we are on our own periphery, separate from them

The inner circle of the beautiful moms

Seemingly without a care. ( though I know beautiful people- and they all have many cares- just different ones)

And we wonder at how one word could be so big

That, with that one thing added to your identity – mother to a special needs child - you would be different forever

But then at some point in our journey, if you are lucky you start to look at our life with our own eyes.

You see the beauty of the child you do have

The force of the love your child has for you  frees you to see the loveliness of your life


If you are luckier still - you get the eyes of wonder

The eyes that look for each little step and celebrate it and take nothing for granted

And then,  one day, if you are the luckiest you stop

See yourself in the mirror

Catch your life reflected back at you

Realize with surprise

That you are the beautiful people



We are perishing for a lack of wonder………………… not for a lack of wonders”

GK Chesterton

Melody asks us to share the love this weekend at Slurping Life. Please do join her to meet her and other wonderful bloggers who share a slice of their lives

Saturday, May 8, 2010

Finding meaning behind Autistic rituals

Its 10 years ago

I am leaving for my Masters Degree at the University .

I am homesick and forlorn – even before I have left -for I will not see DH for the next few months

And when you first get to the University – quickly arrange some things around you that remind you of home – like some pictures” advises a friend.

He knows of such things- as got his MBA from Singapore.

He knows how lonely and disorienting a new place can feel at first

Arrange it the same way it was at home” he advises “ it will make you feel better

Its true

Familiar things are like a scaffolding for our identity

( I feel such a pang for homeless people sometimes for it must be terrible to have nothing to ground you )


There is such safety in sameness.

I have always known this

Therefore it feels paradoxical, to perceive such strangeness, in autistic rituals

He is just so odd the way he must do 3 things in the same order before we leave the house ” we say

“ He is having a really autistic day today … lining things up all in order

We will describe the day we knew for sure that our child had autism – a sinking feeling when we saw our child had lined up all the shoes according to size and color

We will lament at their “obsession" with alphabets and numbers

After a while, DH and I, realized that R's passion for numbers and letters was no odder than any neurotypical child’s carrying around a security blanket. Or indeed my desire to ground myself with when new at the University with some objects from home

Now that I observe – really observe – what R does - with a firm belief that it has meaning  – instead of dismissing it as purposeless stimming – I find his stereotypies  give me  unique insight into his thoughts

For instance tonight he wrote on the side of his bathtub ( "we made it" ) which DH observed was a carryover from the "Little Einsteins" show he had been watching where the characters are in Antarctica rescuing a Totem Pole.
DH says he has been watching this show in all his alloted TV time today


This morning I observed him on the computer playing games with Penguins

Later I found that he wants to ice skate on the wii


Then of course when It came time for bed – and he had to choose a book to read with his Dad – I knew even before he said it that he would choose the book “ice is nice “ by Diego




Therefore its clear that, R is currently interested in Snow and ice and is choosing every way  he has to learn about this

By believing that his actions have meaning for him - instead of dismissing them as perseverations - I get to know him

In fact - perseveration can be used as a motivational tool to teach.

For instance, tomorrow I will show him how to turn water into ice, do ice games on the Wii with MingMing ,  dress up our dollies and do some pretend play with snow and cold etc

Truly while Autistic people may seem very different than us –(  in some cases we may feel like they are from another planet ) but the reasons for their behavior are the same as for any of us.

When we  feel that we lack control,  ( for surely a world that speaks in a different language that us must make auties feel perplexed and out of control all the time )-  we seek order -we seek sameness

We shake our head sadly when we are asked if our child plays with a toy “appropriately” or if he just lines them up
( Now I feel I should have answered - "but really he is playing with them appropriately.. change the question please - ask if he is playing like a neurotypical child or not?" )

Or when we sigh at his needing to take the same route to the grocery store each time

Its really no different than me needing to check if I have my ID a hundred timeswhile driving to the airport

The behavior may look strange but we truly are more alike than different!

This is only one of the many things I learned from Dr Stanley Greenspan

Monday, May 3, 2010

W/0 April 27th – the week I missed

I was out of the home most of this week .

One of my colleagues – himself a devoted dad – says its like he missed a whole week of his kids

It is so very true especially in the way I travel

I compartmentalize to the nth degree – this is sort of easy because R does not like to talk on the phone and DH is too busy with building a garden shed to talk !

Random things disturb my equilibrium from time to time -
Dandelions on the road side, a neat row of Sprite at the focus group facility that I know would make R swoon with delight, someone ordering a pork chop- this one makes me miss DH quite terribly for the man loves his pork

( Work, chores and Floortime -do not allow for much only-us time between me and DH – except for our precious lunch dates- and now I miss him at all restaurant meals - when someone orders the things DH loves - disgusting-sounding things like pork-belly fat or when I cannot make DH order desert so I can eat it )

Its strange to think that when I travel- R and DH’s lives go on without anything of me

My character in our story re-enters in a subsequent chapter – having had nothing to do with the prior chapter!!!

This sounds forlorn

But it isn’t – if there is joy in indispensability( how much we love to be needed!) – there is great freedom in knowing that life goes on without me

I wonder if my mum and dad feel this way about me and my sister

Here are some random things we did these past 10 days

Kites

The weekend before I left we flew kites – this was a lot of fun .

My mustachioed DH flying a ladybug kite is a darling sight to see and R had a lot of fun( in the way R has a lot of fun )

He enjoys them slowly – seeming to ignore them when they are actually happening

And only being able to involve himself in it after its over


White board writing

Here I wrote down for R – that he had two options

1. Come with mom to Kohls

2. Stay home with Papa

As you can see R chose a third option

Not only is this an example of flexible response ( Person A responds to Person B based on what Person B said ) – far superior to choosing between two alternatives

Its also an example that R has chosen to respond using the same method I used – a written question begets a written answer

When we are at Kohls – he wants to go home and whines and tries to herd all of us together.

Funnily whenever he is stressed out – his pronunciation changes .

As a child who learned to speak through hyperlexia -under stress- he pronounces Home as Homey ( because that is what it reads like )

Conversation

Scene - me intruding on to his TV show and R wants to be by himself as we have played together too much

Me : Shall we sing Up Down with Rocket

R : “Stand up.. walk” ( how interesting that he describes the physical actions I should take – rather than the more neurotypical statement –“ go away”)

Me : Pretend Crying – “Mama sad… “

R instructs : “Mama Happy” ( gives me sideways hug ..waits till I stop fake-crying and then )….Walk

When I am gone

I find one more way in which R uses his “Shee with Mother “. This time as a threat. After a scolding from his dad – he threatens his dad with “Sheep with Dadi “ ( granma )

Dr Stanley Greenspan dies at only 68 – I am devastated – he was truly the greatest mind in my opinion in Autism

When DH is hunting for the remote and asks R – R takes him to the rain water-harvesting tanker that Dh has created where R has dropped it –
DH is so entranced at how R remembered and confessed even though he knows it was a bad thing to do – that R gets only a fake scolding

The weekend after I return we buy a bike

I get Barbara’s book – how to cook with "mommy and me" – and inspired -I make pizza with R

We play and cook most of the weekend

Saturday, May 1, 2010

SOOC Saturday : Returning Home

Last night I return after the week on the road

R looks at me stunned ( I have asked DH to  not write me in on R's schedule - in case I am delayed )

He then tries to pick up the threads where we left them

Makes me sing all of our  songs

Yellow Submarine
Hello Goodbye
Rudolph
Deck the halls etc

Slowly trying to take in that I am really there

I used to wonder earlier why he rushed up to me joyfully every evening after work -lifting his arms to be picked up, covering my face with kisses

But needed to somehow adjust when I return after a work trip

I used to wonder if he somehow had become used to being without me and that he had not missed me

But nowI know that the fact that he needs this sort of  buffer zone before he fully connects -  means the opposite

It means  he had missed me too much

 I ask him "Shee with  Mother " ( mommy do bedtime )

He answers solemnly - "Ess" ( yes )

As I  do our familiar bedtime routine - which now incorporates Pablo and Diego - he suddenly looks at me sadly - his face crumples - and the tears start

I hold him close and tell him that though I travel - I take him with me everywhere in my heart

And I do

As he finally drifts off into a deep sleep ( sleeping for the next 12 hours ) I look at his slight sleeping form  in the half light and thank god for the giving me this  enchanting child

Melody asks us to share a truth that we feel in our heart today

And the truth - is that I feel there never was a mother more loved

For more fun with SOOC Saturday and to meet some wonderful bloggers and meet my lovely friend Melody go here

Floortime Lite Mama

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