Monday, January 31, 2011

The last days of summer Blog Gems

Jen at King and Eye has this fabulous idea
She calls it Blog Gems ....what is so fun about this is that I am getting to read some old posts from my favorite bloggers that I had never seen before
Here is my post from 2 years ago at the end of summer
The theme is "holiday" ( which is what they call vacation that side of the ocean )

End of Summer Vacation 2009  

August 16 2009

"Sheep"

Says R tugging at my apron while I am cooking for the week - all four burners going at the same time.

He looks at me earnestly - his head to one side over folded hands- ( looking extra adorable) and repeats again - "Sheep"

This is nothing to do with bovines

He is asking to Sleep

And he doesn't want to sleep either.

He just wants to loll around on the bed - crumpling up the pillows, getting compliments on his general all around amazingness.

"As though I have nothing better to do"


I fake-grumble with a smile - even as I untie my apron to proceed for a loll-about

But its the truth

Its the best thing to do today - the last weekend of summer vacation.

There are people measure things by lasts.

And there are other people who measure things by firsts

I am unfortunately a person of lasts

On the last day of a week long vacation, I will be heavy with sighs and downcast looks

DH will offer mathematical comfort.

He will quickly calculate in his head and say

"By wasting 1 out of 6 days you are wasting almost 16 % of your vacation.. you should try and enjoy your last day most"

But I will be disconsolate and kick the sand sadly.

Too weak to care ( for this is how melancholy affects me )

And I have been particularly melancholy this week as this lazy summer is behind him and school has started

The early rise time means early bed time.

Its the end of impromptu trampoline time with the fireflies,of acquiescing to an urgent "Jump Jump Jump" request from R while getting ready for bedtime, of watching sun glow orange lazily adrift in the kiddie pool.
Of hearing DH expostulate - Arent you getting him ready for bed yet?

Full of maudlin melancholy I have been this week.

DH has asked me nervously the other day, if I am PMSing.

He has also inquired as to whether I am sick

Now,in silent comfort (as is his way) he is making some shelves for the kitchen.

For he looks ahead, and is a person of firsts and is simply thinking of how good it will be for him to finish his projects while R is in school.

Summer will come again next year.

But this summer- of R being 4 - still a baby -still going to baby school -is gone for ever.

My mum says when I was much a little girl - I would end all my essays on picnics, birthday parties with a signature sign- off line.

( Though from her descriptions of my essays it appears that my primary preoccupation while describing any event, was around what was eaten by me.)

Anyway the sign off line was this

"We had lots of fun, but time was flying like a bird and it was time to go home "

And so it is today.

Goodbye sweet summer.

Thursday, January 27, 2011

The role of the Sensory System in Autism

My dear readers

If you dont have children with Autism or with Sensory Processing Disorder  you will probably find this post boring.

But I really wanted to share our experience for those parents who do

DH and I have come to believe that the sensory system plays a critical role in Autism and this post explains why its so important to understand your child's sensory system .Of course this is just our POV and we are parents, not professionals in the field

Our Story with Sensory Processing Disorder


I think all parents notice symptoms that bother them.

R was a tactile sensory seeker right from birth ,

But, R’s sensory seeking behavior never caused us concern.

Sensory seeking manifested itself into a child that hugged, kissed a lot

This was fine as we are a very demonstrative family full of hugs touch and kisses.

( Often I am grateful for this twist of the Sensory dial .

If it had been turned the a little bit to the other side – the side of sensory avoidance – the child who hates to be hugged – I don’t know how I would have borne it .

I hope I would have learn to give love and receive love in the way in which R needed to be loved

For, surely there is more to loving and being loved than touch and hugs and kisses ?

But I must admit that I am grateful that my child is a sensory seeker )

But I digress

In those early days, we focused on the thing that bothered us - the lack of talking

And went down to road that led to a diagnosis of Autism

Our main way of teaching R was through play – we used the tools and techniques espoused by Dr Stanley Greenspan – a method called Floortime

As we learned more about R’s Autism – I started to realize that Autism may have been the outcome but SPD was a major factor in it

( a note here , this is only my opinion about my son. And of course not all children with SPD have autism . . Dr Grandin once said that all children with Autism have SPD. Our belief certainly is that  SPD has played a critical role in our son’s autism)

The urge to pay attention to the people around us to imitate them, to woo them are the fundamentals upon which language and social development is based

A baby pays close attention to its caregiver – to everything the caregiver says.

This creates the basis for receptive language

The baby wants social approval and is encouraged by attention and wants to imitate.

When the baby tried to utter words mom and dad show their great approval and the baby continues to practice . This starts to build expressive language

And so on so forth

But what happens when the sensory system of the baby is neither getting nor expressing the right messages

What if hearing worked differently and a parents’ cooing sounded like yelling and caused fear or were not heard at all


Or every sound in the room ( the sound of a plane flying in the skiy , birds twittering,) felt like an assault so you wanted to tune it out ( or did not register at all )

The typical development that comes from the back and forth interactions between baby and the world would be disrupted –

This is the first aspect of how SPD can be a huge factor Autism

The second way in which SPC can be a factor in autism is the way in which babies may cope with a world that is either underwhelming or overwhelming

In effect they may be selectively tuning into stimulus in their environment that undermines typical development

They may lose themselves in spinning wheels or watching baby Einstein DVD’s not because they are fundamentally different from us but because the world is too much for them and they need to zone it out ( example Walker's mom in “The boy who loved Windows” realizes that he zones into the light pouring in from windows in order to blind himself )

What If the child( like R ) sought out a lot of visual sensation – wouldn't TV with its bright flashing lights be much more attractive than people?

In effect, their coping mechanism may be to tune out the very stimulus they need to thrive and tuning into stimulus that is not of use

Slowly we started to get a grasp of the way R’s Sensory system worked in order to optimize his ability to learn

Dr Temple Grandin says Sensory Readiness therapy is critical and akin to taking a cellphone outside to get a better signal
We realized with the help of his OT that R needed a lot of gross motor activity in order to organize himself

And so, in that first year we simply filled his day with singing, swimming and swinging

We would do very basic games with these gross motor activities

We found he was the happiest and calmest in water

So the bathtub , the swimming pool ( and eventually even a large trampoline ) became our Floortime therapy room

In this way, I believe every parent of a child with SPD needs to be a detective as to what works for their child’s system

We figured out that R used his sense of smell a lot

So when we found he could not sleep by himself – we would leave an old shirt of mine or DH’s next to him

We slowly started to understand that much of R crankiness in new places was not really personality based . It was caused by the insecurity on wondering what assaults to his sensory system awaited him. (I bet all of us would be a lot more insecure if we could not figure out where we stood in space and would be comfortable only in familiar places )\

And so we learned to use schedules so atleast he knew what lay ahead

We learned to figure out how to get him to eat healthy (largely through pureeing of vegetable ) as he is unfortunately an avoider when it comes to textures and has a very limited food repertoire .

We learned to not listen to the standard advice on “extinguishing stims” .

I think when we go about blindly “extinguishing stimming “– in effect we take away a child’s coping mechanism. ( a rather cruel thing to do even though its not meant to be cruel )

So we have made a deliberate decision to accept looking a little odd rather than for him to be in discomfort . In truth, the only kind and good way to remove a stim, I think is to replace it with a more socially acceptable stim .

All in all if learning about Autism was a shock, SPD has been more of a gradual awareness with the final diagnosis coming about six months ago even though we have been adjusting to it ever since R was an infant .

It has helped us be better parents

R’s SPD appears to be resolving somewhat as he grows up and starts to be more conscious and deliberate in the way in which he copes with it .

As his sensory system matures , some things he seems to be in fact getting desensitized too

All in all things are much better today than they were a few years ago and I hope they continue to get better and better .

I write our family’s story in the hope that it will help some parent understand their child and their responses better .

To not to see a lack of touch to mean a lack of love

And to love and parent in a way that the child is able to receive

Thursday, January 13, 2011

The year begins

The year begins

Peacefully enough

DH and I stand together on the patio of our cabin to welcome the new year  where the snow covered mountain makes you feel like you are all alone in the world ( though in a nice way )

DH smokes a cigar

The tall trees that surround us sway so much that I wonder aloud how they dont fall

DH explains that the roots are really deep and that they are meant to be able to sway

"Without sway they would break"

And I think of how true this is of life as well

My floortime goals of 30 minutes daily

Except for 2-3 days where R and I were really  sick - ( he has had something or the other sort of off with him since the past month )  we have floortimed every single day

I think the "just 30 minute" goal of doing Floortime - is pure genius

Concidentally R has reached the level  where he is suddenly throwing the metaphorical ball of communication back

I am remembering to use a lot of affect - facial expression and joy

And when I remember to do Floortime first before the chores/routine  take over - R is craving the engagement and seeking me out to Floortime some more !!!

This has not happened before

Though R has always loved to be with me - he  has typically been  more interested in cuddling and snuggling and I have to really work at getting the back and forth engagment cooking
he is just so much fun to play with right now

He will initiate play using props - here he is a witch on Halloween

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I cannot figure out the reason -

Is R more ready ?( this is what DH tells me - perhaps to comfort  - when I lament that I should have been doing this all along and how much time have I wasted )

Is it that school has been off for so many days ( owing to snow )? For he no longer likes school :-(

Is it that I am using so much affect ?

I dont know the reason but  its delightful


The snow

The South has been having so much snow this year - The snow has been a joy and a pain

We have made up our mind to just give in and enjoy it

R has sledded for the first time - he loves to lie in the sled - Mother Nature provides an amazing sensory diet


He is developing some very typical responses

DH orders the Happy Monster Band - toys from Ebay and we tell him he has a gift from Santa

When he sees what is in the bag you shoould see the great expression of glee

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Sometimes it truly feels like we enjoying R's childhood in slow motion

Work


Is unusually intense right now and I am so busy which is taking some of the joy away

Plus I am having to travel a lot which always causes me a lot of stress

Hopefully the pressure will ease in a little while

And yet there are so many moments of pure joy that I find myself saying a prayer of thankfulness many times each day

The plane landing delayed last night and knowing that DH was waiting for me at the airport and I would not be driving over the ice alone

His dear familiar smile and pious declaration of "Who works for you from morning to night"( for he has woken at 6 to drop me to the airport)

The charming way in which R runs to me demanding- "Love and hug"

Walking in the snow - on the mountain. Where no one but DH with snow chains on our tires  - has dared to drive. And watching the sun turn the snow into diamonds

All the playing we do in the snow

I draw a big heart in the snow

I label it "Mom's heart" while R watches carefully

"Do you know what is inside Mama's heart " I ask, finger poised to write on the inside of the drawing

"R" says my son

Wednesday, January 5, 2011

Loving this life

Mums and Dads of special needs kids often wonder about what life would have been like if their child did not have special needs

Finding out - can feel like as though a giant hand came from above, scooped us up from the and put us on a parallel road.

We glance back at that other road – the one that we thought we were on.

And we think how much easier that road would have been

We imagine our child without the disability -without the struggles and it breaks our heart.

While I truly understand and empathize( truly I do, for I walk in your shoes ) , I also believe this thinking is toxic

This dreaming of the child we were meant to have, blinds us to the beauty of the child we do have.

Not just in the way we think of our child, but even in the way we think of our whole life

It can stop us from recognizing all the goodness of what we do have

For the only alternate realities we imagine are the seemingly better ones

Just take a minute to imagine a few unfortunate alternate realities.

 Ones in which we are born in poverty or hunger or completely unloved.

And you will see what I mean about there being plenty and goodness in your current universe

The only thing to do is to look at your life and your child, abandoning all preconceived notion of what comprises a happy life

As I type this post - watching "Lie to me" with my husband - my son replaces my laptop ( with himself ) and says "Love ...hug".

This little guy of few words, sure knows how to use them.

I hold him close, I say a prayer of gratitude for this lovely life and this lovely child

How thankful I am, that early on this journey I learned to use my own eyes.

Threw away the old recipe for happiness and wrote my own

Thinking of all alternate realities, of how things are meant to be is futile

For there is only one reality

And its the one we are in

Live this life

Love this child

Sunday, January 2, 2011

Dances with Rain


June 4 - 2009

Last evening DH and I are settling into watch Medium (a show where a psychic finds suspects by dreams)

DH and I always castigate the show.

Me from a Feminist standpoint (how come the only crime show where the woman is the main protagonist, is one where she catches criminals, not by her brains but by her "feminine intuition" )

DH from a lack of logic from the spirits ( if the dead people spirits want her to find the suspect why do they not tell her the whole story in the first dream- why do it in installments? ).Additionally her family is always on the brink of some crisis or another which provides plenty of opportunities for joint eye rolls.

 
Despite our low opinion, we DVR and watch it every Wednesday over ginger tea and popcorn after I get back from work.

And enjoy ourselves tremendously.

But yesterday evening its not to be

The new swimming pool( if you can call it that ) is beckoning like a beacon to R

Swib !! he says

Its starting to rain heavily.

But we pretty much say no to nothing for R

( the two things that we say no to are -bad manners or bad for R – that is it- we say no to nothing else. "Following the child's lead " is a Floortime Principle that has pervaded every part of our life )

And of course I can never ignore purposeful communication

So we go out to the pool in the rain

And play all our games.

I must pick him up and swing him according to the chants of an rhyme ( Zip Zap Zoop –right side together – left side together – a rhyme my niece taught me on a train journey once 8 years ago. My dog had died recently and my niece -only 4 – was trying to cheer me up – I have adapted it to Floortime purposes and R loves it )

I am sure he will be fed up with the rain after he is done with the pool and we are both soaking wet

But its not to be

He insists – "Siduh Huduh"( Swing me a 100 times )

By this time we are wetter than fish and I have given up trying to avoid getting too wet.

So after swinging I agree resignedly, when he says "Jumpuh jumpuh jumpuh "

We get on the trampoline which is wet and slick .

Hold hands

Jump higher and higher

Making circles.

Rain has made a little pool in the center of the trampoline and the water jumps up in rhythm with us.

We go on like this for almost a half hour

Interrupted only by the thunder and R's giggles and squeals of  "Hyduh "( higher)

This dance in the half light of a dark sky feels like magic

If it is all about not waiting for the rain to pass but learning to dance in it.

Then surely this lovely life has brought me both

Saturday, January 1, 2011

Happy New Year Everybody

A very very happy new year to everybody.

I am thrilled to have you all on my journey

Hope everybody has a lovely lovely year
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Gretchen over at the Happiness Project asked what was our intent for this year in one word

Hers was "Bigger "

My word is "Simplify"

My resolution  for this year in my role as  parent therapist are modest

30 minutes of Classic Floortime Everyday that I am home - no excuses

More if I can - but NO guilt if I can't

Why such a modest goal ?

Because I am coming to realise that -

  1. Small goals are acually achievable while bigger goals paralyse one into doing nothing,
  2. Its good to have a goal you can measure
  3. My intent and knowledge are rarely the problem - its simply that fatigue,  chores, inertia  etc get in the way.  I need to have a behavioral solution to a behavioral problem. If I need to create a behavior ( do more Floortime ) - I need to have a behavioral approach ( do 30 minutes of Floortime everyday ). There is no point in having an attitudnal solution - ie reminding myself of why Floortime is so good etc ( I already know )
  4. I dont want to keep guilting myself,  measuring myself against the standards of those perfect mothers that write the books about putting their whole life into becoming parent therapist. I admire these mums and dads and am inspired by them - but its not me
I have some fitness goals too and I will talk about them in my other blog called Losing Ten with Zen

Do you have a New Year's resolution as parent ?

Would you care to share ?

Floortime Lite Mama

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