Sunday, February 27, 2011

The joys of the unfast lane

Entering this post Jen's fabulous Blog Gems


This fortnight's theme is Happiness 


My favorite topic .. I am looking forward to reading all the other posts


Here is a post from  4 October 2009

We are having lunch with Nancy Kaufman - 6 other mums and me.

We are going around the table introducing ourselves and talking about our child and their special needs.( all the kids have apraxia only- and to me what sounds like really mild Apraxia - except for R  )

One mum is asking anxiously "he just cannot say the " R" sound .... will he always be this way.. will he sound like he is baby talking into his teenage years" ( her kid is 4 )

Another mum talks about how her kid speaks in whispers

Another talks about how she is so worried about her youngest because her other two are "just perfect and have no problems at all"

They all look so anxious and worried about things that to me seem simple.

Clearly with just apraxia and these dedicated mothers, they will do just fine

When my turn comes I say

 " R has autism and apraxia ...he could not speak at all till he was 4 .. because he did not know that words meant things.. auties think in pictures .. now he is slowly teaching himself to talk through reading .. but the apraxia is giving him problems .. his apraxia is really bad .. but he is an awesome little guy .. so bright and hardworking. We feel sure he will overcome it. "

The other mums look taken aback at my breezy mention of autism and apraxia

The speaker pats my arm and says " I just love your attitude"

Sometimes I really do wonder if I am delusional.

Is my fools paradise going to come crashing around me one day? - I am thinking  in the car  on our way back from the conference

I turn around and smile at R . He smiles back !

I am bedazzled . Every time he does this- joy floods through me in a great wave.

For this is not just any old smile.

This is hard earned Reciprocity!

A smile in exchange for a smile

I dont think I can ever not be enthralled by a reciprocal smile  from R, no matter how many times it happens

How grateful I am for each little step R takes.

Later that night as I am putting lotion on his little feet he point to his stuffed toy and says "Tasha" ( for that is her name )

I hold up Tasha and say ( in Tasha's voice ) "Hi "

R whispers back "Hi"

Pretend play interaction!
This small thing that any 18 month old could do - moves me to tears and I run down to tell DH whose grin lights up his wonderful face.

Is it possible that I am happier in life after autism than in life before autism ?

 I would never wish regressive  Autism on any body.
For a regression is the most terrifying thing I have ever been through.
Even though R's  Autism has brought with it ability as well as disability, the memory of his regression can still make my stomach tight!

But through this -  life has forced me to take the scenic route

One of my close friends says,  thoughts like these are all coping mechanisms - rationalizations

She is probably right - I think as I am snuggling into my bed

My bed and my home and my kitchen -made all the more dear to me by not having them yesterday as we stayed at a hotel for the conference.

For one of the strange things in life is that to truly value something - you seem to need to spend some time without it

In that same way - I am enjoying being R's mum - in a whole new and wonderful way in LAA ( Life after Autism ) - with eyes that are grateful for everything

And coping mechanism or not - life is simply wonderful seen through these grateful eyes

Thursday, February 24, 2011

The Last week of February: Floortime Evenings

Monday

DH, I and R meet at the Mall for lunch .

R is  off for Presidents Day

R greets me effusively and covers my face with his signature kisses while two mothers at the next table look on enviously as their son and daughter are engrossed with their own videogames and coloring book

I wonder if they would be envious if they knew that R was Autistic.

Of course the answer is no.

Though from my vantage - I certainly have a lot to be envious of.

This is my worry about the way in which Autism is covered in the media.

  People think ASD and they think one thing.

 If when I first learned about ASD had visualised a child as amazing as R - I think I would not have had as much fear as I did then.

Then I feared that I would lose my child - that Autism meant that he would stop loving us or not want our love anymore
There are many who fear that we will lose all our hard earned funding , research etc if Autism is presented in these gentle tones

But I do wonder if those are our only two options

Present Autism as THE WORSTTHINGEVER  and get help OR present Autism as just a "way of being" and get nothing

For my part, I know I want to add my little voice in the clamor of all the advocacy and say that my Autistic son is the best child in the whole universe and that he fills our life with joy

In the evening we floortime on the trampoline, the cycle and the swings

One interesting thing I notice is that R will now only use the more "grown up swings"- no longer will he use his baby swing ( where I push him )

He is not really able to mount it easily nor really swing himself back and forth - ( global apraxia is a terrible thing :-(  

But I am so proud that I think I will burst

Also he runs to the playroom and actually plays independantly and appropriately thanks to his play therapist Miss G


Tuesday

One funny thing i am noticing while playing with R - he is able to imitate me perfectly.

Some people theorize that Auties have mirror neurons which behave differently than NT's - which is one of the reasons why Auties have a hard time copying things

 R never used to be able to imitate but now he can

Can you grow mirror neurons ?

When I asked DH about this - he described a NOVA article he had seen which looked at the brain of a man with Aspergers.

 Under FMRI  it showed that the zone that dealt with computing  in his brain had started to deal with language as well

 The brain does change and adapt !!!

In the evening DH has to go for a new Autism training at a local Psychologist's office

 We both think regular trainings are essential - even when now that its 4 years - a lot of the stuff we learn are things we know - but we relearn them and remember to apply them

R is sooo tired as he has been up since 12.30 am ( our sleep troubles are back ) and I have not slept well either. 
He has a super silly reason to be awake too  - his nose was stuffy and he was having a hard time breathing through it . So he starts to cry which made his nose MORE stuffy which made him cry more... and so on

So since he is so tired,  I put on a lot of affect( positive emotion )  in the evening

( if it sounds like make up - let me tell you it is )

We play in the trampoline.

I just work on making many circles of communication going

 I had a comment asking  for some concrete examples on my Floortime session post ( He asked that I should give some more examples of circles of communication )

Think of a circle of communication like a ball you throw to the child - when the child throws the ball back - you have a circle

So for instance yesterday on the rim of the trampoline there is a little water collected on its edge


Me( high emotion )  : R looooooooooooooook
R: looking the the water and saying: "puddles"  ( Cricle 1)
Me ( taking a stick and dipping in the water ) Mama paint ????
R : Yes ( circle 2 )
Me: What shape ?
R : silence  ( circle 3 fail )
me mama draw circle??????? ( try again )
R : Circle
me : draw the circle  ( circle 3 )
R : squeals excitedly
Me : Handing R the stick
R : stick-paint  ( circle 4- wow he made up a word  )
R: draws a circle
Me : squeal - WOW ( circle 5 complete )


This is a great example of Floortime and exactly the Level I am working on - Level 4 : complex communication

The idea at Level 4 is to have many exchanges of communication
  1. in a row
  2. about the same topic
  3. in an unpredictable fashion
These three aspects are the scaffolding of all human interaction - and specifically of conversation

In the trampoline - we have a much lower quality of interaction - as R just wants to jump with me and not interact verbally

In the following interaction - again think of this as playing catch - but we are changing topic - balls are being dropped by R  ( quite intentionally as he wants be to just jump with him quietly  and I am okay with doing that in the beginning but don't want to waste the entire trampoline time )

Me : Mama jump high or low
R: All done high low ( circle one - but R is trying to end the conversation )
Me : ( trying to keep it cooking, I  pretend to cry dramatically ) boo hoo hoo hooo
R laughing as he knows I am pretending: Mama sad ( circle 2 )
Me -Boo hoo hoo hooo  soo sooo sooo sad
R : All done sad or crying ( circle 3 )

We go on like this.

I use all my techniques of pretending to fall asleep, or needing his encouraging kisses as I am too tired to go on etc

We play in the playroom and ride his bike ( which he cant) and carry his helmet everywhere that he adores but does NOT want to wear - not for more than a few minutes anyway



R's therapist cancels and though I had planned to make a quick run to Target by myself

I have to take him - which is a BIG mistake

R is eager to go but has a whole plan which is to read books( he treats Target like the library )  and look at the birthday cards ( with the numbers written on them "you are 11 years old")

In the few minutes in the book aisle - a pretty slim lady tries to start a conversation with me

She says her daughter ( who peeks out shyly from behind her mother's legs ) is in R's class ( his typical class )

We are In Sharp Contrast to their elegant appearance.

I am wearing a particularly unattractive pair of sweatpants and holding a bottle of  dandruff shampoo.

R has had a verybadnogood hair cut - owing to moving suddenly at a crucial point when DH was cutting his hair and looks like a small and unattractive convict.

I tell him to say Hi.

He says "hi to Isabella " without any interest and scratches his bum.

I am flustered and shake hands with Isabella ( in a somewhat queen-of-England manner - don't ask me why) and we make a swift exit ( though the lady and the kid were very nice to us )

When DH returns full of his pious  virtue in attending the training - i am running late and have my hair tied up in a towel turban style still  looking flustered like an inefficient hausfrau.

Dinner is not ready and we are running late with bedtime too

R - hysterical with lack of sleep - ask me sit on the stool for cuddles ( his after bath routine )

He cannot say "l" so he keeps saying "Mama sit on stooooo-ooooo"

This makes him giggle uncontrollably and its so infectious that I start to laugh and laugh and laugh  and we cannot stop

And I am on top of the world again

Wednesday

DH is very very proud of himself as he has bought a grill, heating and some home-improvement ( this he has explained to me in some detail but I have tuned it out as it all sounds too complicated ). He is very thrifty and  he has driven 150 miles each way to save on shipping

I have to go home at lunch as R needs to be with a babysitter in the afternoon and so I want to make sure that he gets off alright
His babysitter is also his ABA therapist - R adores her but he bursts into tears as soon as he sees us

His bus driver is very upset because he is crying and says " I don't know what happened .. he is the happiest little thing ever "

But I know what happened - R had been looking forward to his downtime ( lunch and computer ) and is now worried that he will have to work  straightaway

His ABA therapist and bus driver discuss his many perfections while I assure him that he will have downtime and he wipes his tears away.

In the evening R is exhausted because of Physical Therapy -

For R Physical therapy and Occupational therapy are really exhausting.

DH and I watch Parenthood and drink tea and muffins - while his therapist is here.

Do you watch this show? It has a excellent portrayal of Aspergers ( though R is nothing like it)

Amazing Andy ( he is an Aspie who has a business with a bug show ) moves me to tears as it reminds me of how difficult things may be to R in the future -

But what really makes me cry is the preview from the next show where the dad and mom need to tell Max that he has Autism

I can bear my own pain - ( in truth I have very little ASD-sadness)  -

Its the thought of R's that is very hard to bear

So when it comes to Floortime - I make extra effort to show that the rest of the time will be fun

So we do lots of Sensory Motor play

Now in Floortime the objective is not to entertain your child passively (though even this has the advantage in that the child starts to have very positive associations with the concept of mother/father )

But to get circles of communication cooking

So I pick him up( my arms underneath his armpits and close to me )  and wait
R squeals  : Round and round ......
Me: turn him round and round ( circle 1 )
R: more squeals
Me: Freeeeeeeze ( come to halt  with much drama ) circle 2 )
R;More round and round
Me ( plays dumb) oh no : I forgot how to do round and round ( circle 3 )
R : side to side
Me : turn him side to side ( circle 4 )
and so we continue

We go in the trampoline and play some more .

And then in this amazing tree house that DH built this last summer - have I showed it off yet

He has put all his unconventional creativity in it  and it has all sorts of interesting things - little hideouts etc


R takes all the numbers with him and there is a pile of leaves inside the trampoline that I have not cleaned

It becomes a lovely place to play hide and seek  and its an easy way to get circles going ( even though he does not quite like his numbers being out of sight )

So we get circles going through all the numbers hiding and the numbers pretending to be alive and jumping out playing peekaboo

Waiting for a response is a critical part of getting Floortime cooking

Example my Iphone falls down in the middle of our jumping

I say " Look R what fell down?"

R looks at it for a while and says "Photos fell down  "( which actually is the primary thing he uses my phone for- looking at the photos I take on it )

I love this. Not only did I make him think. But I also got a unique understanding of  his POV, what he thinks my phone is.

I am writing these details down to sort of get an idea of where we are Floortime-wise - so as to measure how we are doing.

 Also this post is for some of my readers who are trying to get some concrete examples of circles of communication

On the positive side -

First , Floortime is addictive: The more you do the more you want to- So its so much easier than it was in the past
Second I am finding that R is developing his own ideas and is able to express them verbally ( example"stickpaint" and "Photos")

On the negative side

I think we still have such a long way to go - at his highest he is firmly at level 5 ( where he has some pretend play ).

But he also weak on Level 4 ( complex communication ). You can click here for a quick refresher on Floortime Levels

We rarely get a very long exchange cooking

We keep throwing the ball back and forth but sometimes R drops the ball and then I have to throw a different one

Even with different balls its hard to get more than 10-20 circles cooking ( and that on preferred activity ) and Dr Greenspan would say you want 50 circles before you can stop counting

I think we primarily need to work on that

And yet I just think of the distance we have come

DH leaves in the evening to go to Homedepot  to get some missing parts for something he is building

As he waves goodbye

This child that did not know his name three years ago

Waves to his father

And says "Bye bye to Papa ...talk to you later "

Sunday, February 20, 2011

The second week of February

The Weekend

Saturday is a day of stunning sloth  -we have an Inspector Lynley orgy

R has been introduced to Doritos in a party they had at school the other day and  has been asking for them incessantly

So rarely does he ask for anything that we make a special trip into town just for chips .

 As R stands in front of the chips section and says "Orange " ( for the orange packet ) , I tell DH that we are now officially brown trash - for who else has just Doritos and Sprite on their shopping list ?


We take long walks each day .

DH says one day that we should leave the trails and climb up the mountain .

I tell him that he is welcome to do so - I will admire him from a distance - which I do

Here he is on top of the ridge


He jeers at me for being a wimp and a girl .

However he gets a splinter in his hand. Later he shows it me several times asking me to tend to it with soothing ointments and tender words.

And also tells me that I should have not let him climb the mountain and be "wounded"

Sunday ceaseless  toil as we clean the cabin, go home and then cook for the week

While my friend was here last week - we cleaned out the kitchen pantry  ( DH in fact went EXTREME and added new shelves - really  my hubby is soooooo useful )

Clean is infectious as I have been cleaning out the frig and the freezer - 15 minutes at a time ( fly-lady style - The principle is this- if you have an annoying giant painful task to do - set your timer for 15 minutes and do it for just that 15 minutes )

The refrigerator and freezer are  looking stunning and I spend much time with a feeling of self satisfaction.

The pantry was also overfilled with staples ( the bane of shopping at Sams club ) and I am reducing the stock of them


Monday

Is Valentines day - I and DH make fun of this holiday as its a made-up holiday - and how we are not going to celebrate it

DH wisely gets me flowers

R is soo excited about Valentines day - he has been saying to us "Be mine Valentine"

He insists on buying this balloon and its funny how happy he is with this 2.99 balloon



The weather is fantastic and we do all our Floortime in the trampoline

Made up songs  in the trampoline are the perfect Floortime formula

We make up songs

Like  I will start with "Old MC Donald's had a ( pause) ... R fills in "ocean "

I will say "And  in his ocean he had a .... " R will fill in "Dolphin "

Similarly we can do themes around " had a zoo"  etc

These are really great as it is helping R to have his own ideas

One of the things I love about Floortime is it makes the child think  and express their own idea.

We do our version of "1,,,2,,,3,,,,4 tell the people what she wore " where we describe each other 's clothes

In the evening we go to Applebees - we tell him its to celebrate Valentines - and he orders his own dinner( ie he points to it on the kids menu )  and eats it all by himself  - he does not leave his seat even once!

From time to time he tries to join the conversation by starting his own topic - like by saying all the months of the year

A giant lump is in my throat as I know how much he wants to have a conversation .

But I remind myself that  I could not have imagined this day 2 years ago - where he would not need any electronic entertainment in a restaurant

So who knows what the next 2 years will bring?


Tuesday

For some reason R has been eyeing helmets for a while - DH is a genius and  he gets R just a blue helmet with his bike

OMG R is in heaven



The helmet goes EVERYWHERE with us

We ride R's bike which he really wants me to do and though  I tell him that I am too big for it



The weather is glorious and we have a floortime evening in the trampoline

Tomorrow I am interviewing someone and taking them out to lunch so we go to the car wash

We have never gone to a car wash - DH says carwashes are for wimps and spineless people and says  people with a spine wash cars with soap and hose

OMG I LOVE The car wash - I tell DH he can despise me all he wants but I am NEVER washing car by hand again

We go to the library

The librarian is old  and she is soooooo slow returning my books . I try to put her at ease by telling her how much I enjoyed the "Inspector Lynley Series"

She looks down at the DVD she is scanning in - "The word of god " and says that it sounds like a nice book

I fervently hope she will not borrow this DVD - as its a story of murder and mayhem and about a man trying to sell an ancient religious book mixed up with a story of illegal organ sales

Wednesday

R has PT in the evening. Plus I am late coming back from the office so there is  no time

I think R is addicted to Floortime and he cries before going to sleep as all our time together has been logistics time

I am sad too

DH and I watch house and Modern Family( I thought Modern Family was the funniest show ever but now I think "Parks and Recreation " is

Thursday

DH and R are out of the house for Musical Gymnastics  when I return home and its 70 degrees and sunny outside

I take the opportunity for a long walk and return in time to make tea and snacks for all of us

R is exhausted from school +ST + Play Therapy+ Musical Gymnastics - so I just let him stim and unwind on the computer

We do floortime in the bathtime playing with the numbers ( quite a fun game of me pouring numbers on him )

I think of a new game - where I put a number on his back and make him guess - but we are too exhausted today to do it

R does not sleep in the night and neither do I - I have noticed a pattern where neither of us can sleep the night before full moon

Friday

We head to the cabin in the evening where R is reunited with his beloved Wii Sports and plays all the games (with a horrible lack of skill )

Saturday

Super lazy day - I try to make all Saturdays lazy and do the bare minimum of just meals and picking up

DH grills a delicious lunch : chicken sausage, grilled garbanzo beans and asparagus


We eat lunch while R having already eaten his lunch loiters in the hammock swing


A job  recruiter contacts me by email and has described such a high energy job that I have to go and lie down so exhausting is the description

We take a long walk in the trails - R is in the wagon. DH cleaned the wagon with the pressure washer and it looks good as new


We find twigs in the shape of "Y's" and make "X's" with twigs - R is delighted


He is ecstatic to be in the wagon too  as he hates to walk

For half the trip we make him walk - by making up games of "run run run " to the "green house" /the sign and then "freeeeeeeeeeeeeeeeeeeeeeeeeeeeeeze"


We do some amazing floortime in the bathtub where I set the stage with "bubble bath " and balloons

I met a Floortime expert in the ICDL conference in 2008 and she said there is no child in the world who cannot be wooed by Bubbles and Balloons


Its very true

As with the bubble bath you can do hide and seek with the numbers under the bubbles

Have a Bubble Ball fight ( though R does not get that he could throw the bubble ball at me too )

We release the helium balloon and do floortime with this as R instructs me on letting it go to the ceiling or making it touch the ground

To R's amazement I make the balloon "kiss the lights"

Like all new ideas he does not embrace them - but I am sure he will ask for this the next time we are here

I have a conversation with him

Me : Jacuzzi on
R : no no
Me : you  r the boss
R: Great !

Its funny to have such a typical conversation with him and it makes me smile

Sunday

DH is still asleep.

I am drinking coffee , munching my Kind Bar and writing this post sitting up in bed

 R does Wii Sports and comes every few minutes for a kiss and a hug and a demand to "be a penguin" "flap my wings and fly"- which is why this post is taking me so long to write

The rain falls softly outside and I wish that I could stop time

Such is the sweetness of my ordinary life

Thursday, February 10, 2011

The beginning of February

Friday

On Friday morning - R wakes up with hot forehead and flushed cheeks .

I call to let his teacher know that he will not be coming and she says that 50% of the school is out

By evening he is simply pathetic - weak and wan - and wanting to just lie in my lap and be petted

When we ask if he wants to go to the cabin - he answers pitifully "stay home "

But post Tylenol he is bouncing and begging to go to the "New Cabin New house"

So we pack and leave

We know the reason why he wants to go to the cabin is that is where the Wii is and he has suddenly rediscovered his passion for the Wii ( through videos in the youtube )

We snuggle in bed and watch the Inspector Lynley Series ( we borrow the DVD's from our library - for free ) - while R nestles with his arms around my waist


Saturday

DH and I are both under the weather .. We loll around all morning too listless to do anything -

By afternoon we summon up enough energy to go to town .

R asks to eat at Mc Donald's
We go through the drive through pay for the nuggets s but forget to take the chicken - its so funny that R is the only person who notices and as soon as we drive away - he squeaks from the back seat " chicken chicken"
He he he - the person with the poorest executive functioning skills  - has the best
DH and I smuggle his Mc Nuggets into Chick-Fil a so we can eat their amazing Spicy Chicken Burger

We continue with our lazy day and watch two movies

The Kids are all right
pretty good. Story of a gay couple ( Julianne Moore and Annette Benning ) who have two children through a sperm bank) . Kids grow up and contact the donor and he comes into their lives

Going the distance
nice romantic comedy with DH's favorite Drew Barrymore

Sunday

If Saturday is a lovely day of sloth

Sunday is a day of chores

DH, I and R take a long walk around the trails of the cabin .

R has some confusion regarding the purpose of a walk and thinks he should be carried - or swung between us and we do this from time to time

Plus every few minutes - he must stop and look down the valley






We go home and while R has therapy - DH and I cook for the week

At 6 in the evening -  we discover with a shock that his HW  to collect a 100 random things for school is due tomorrow - and we ask his ABA therapist to help him with this
R catches on really fast and has a lot of fun doing his homework .it makes me think of something I read on Dr Boucher's blog recently  - that accomplishment is the only real source of self esteem

Monday

In therapy, R is reading a book called " Mr Noisy"

He has a lot of difficulty dealing with the loud sounds and his teacher has suggested reading this book with him to help him cope

When his therapist asks him how he feels when people are noisy and shows him the options
his hand hovers for a minute over the word "mad" but then he moves quickly over to "scared"
and he says " I feel scared"

( this is another discovery she made - R can answer most questions when given multiple choice options - but not when asked open-ended question )

I am so proud of him that he can identify his feelings correctly

Tuesday

I read some of the comments on my Hopeful Parents post with dismay.

Many have written very nice comments 

But a few misunderstand my point and either assume I mean they should "love autism" ( not my point at all )

Or that I dont have a really autistic child and am dismissing the pain of parents of kids with severe autism ( not my intent either )

DH is such a comfort and so are your and my other friends comments.

Thank u so much

To cheer myself up I indulge in some  dreadful sin as we go to TGIF for our date lunch and share the brownie obsession with DH

But OMG its sooo good




Wednesday

R and I have a lovely evening

My "30 minute Floortime- then let yourself off the hook" -  idea continues to be pure genius

Its really easy to find opportunity to floortime anywhere

For instance while on our indoor swing

I take up various stufffed animals and sing

"If you are Diego and you know it ... shout back pack"

Then I hold up another toy and let R fill the blanks

"If you are ------ ( R fills in "Baby Jaguar" ) and you know it , ..... ( r fills in - "clap your paws")

he has difficulty falling asleep today .

Finally I give up and ask DH to lie with him

DH tries for a while but is annoyed becasue "R keeps mewling for mother"

And tells him that he must sleep by himself

I come back an hour later and find R fast asleep but in the bathroom .

Where he has done his sleep routine of reading the Teddy Bear counting book ( which I must read in Spanish- atleast all the numbers  - this is a great trial for me -)



He looks so sweet and small and when I pick him up and put him in his bed he wraps his arms tightly around my neck and so I lie next to him "for a while"

But then wake up when the alarm goes up feeling cramped and stiff in R's tiny bed- with DH boasting about the lovely sleep he had all alone!

Thursday evening

DH takes R to muscial gymnastics -

And I take a long walk and also fry Samosas ( like Peirogies ) to ingratiate myself with DH  .

R has had school followed by Speech therapy, Play therapy and then Gymnastics so we simply roll around on the floor for literal Floortime

R is mad for DH's white mac

He is always asking him "please can I have a Papa's white computer please"( we have taken the Nancy Kauffman idea of giving the child certain scripts  and this really works great )

Nowadays DH makes him answer 3 questions before he gets the white computer - a great strategy

I move around the house clearing up and R moves with me precariously balancing the heavy white laptop - as I pick up and move every 5 minutes - he needs to move every few minutes to stay close to me

How can I describe how moved I am by his great affection ?

He settles himself once again on the kitchen floor as I move there and begin to wipe the kitchen island

I kneel next to him  --sudden tears springing to my eyes and tell him how grateful I am to have him for my child

R wraps his skinny arms around my neck and says a "tight hug then gentle hug then tight hug"

And  I say both prayers ( for arent there only two ?)

A prayer of thankfulness for this gorgeous life

And a  prayer to please let life always be this sweet

Saturday, February 5, 2011

Why I dont hate Autism

I am over at Hopeful Parents writing about the importance of not hating autism

If you have a few minutes do join me there

If you hate clicking links, here is the post

Why I dont hate Autism and neither should you ?

In the early days of Autism it seems rather important to decide what we think of Autism

Which camp we belong to

Are we a neurodiversity believer ( ie Autism is simply a difference, unique way of being )

Or are we a curebie? ( Autism is a disorder, must be cured )

The camp we fall in depends on many things-

Perhaps it depends most, on the particular kind of autism our child has

I had come to believe that as long as we keep giving our child what they need to bloom – it really does not matter which side we are on ( for of course the most important side to sidle upto is that of our child )

But of late I have come to think that its really important to not hate Autism

And the reasons are very simple

I think by taking a stand of hating Autism, we make it into a big insurmountable generality

For instance, our child has a meltdown in a restaurant

We are embarrassed and say – “OMG – I hate hate hate Autism”

Or our child has anxiety about going to school or with us being on a business trip and away from home

And we say to other mums and dads of Auties “ I wish Autism would give me one day off “

And we sympathize with one another ( for all of us have had those things happen to us ) and we all agree that we hate Autism

But generalities are dangerous

For the implicit assumption is that since Autism is incurable – so are all the aspects of it

Instead I find it incredibly empowering to be specific

So I ask myself the question

How do I address anxiety ?

By moving from the general to the specific – we put ourselves, in the situation of actually being able to do something about it

Another reason occurs to me - as R doing a number tutorial on a computer next to me pulls me closer for a kiss

Hating Autism stops you from seeing your child.

It can blind yourself to the magic and wonder of your unique child and make you simply see symptoms

There is another very important reason to not hate Autism

Many Adult auties believe, that Autism is a very important part of their identity

Being a minority myself , I can certainly attest to the fact that when there is difference – its much better to take pride in the difference , than be ashamed of it ( see post by Xander's mom in "Wait what")

So, now if someone asks me what I think of Autism

I answer that I don’t

I think simply of my child

And how to be a good mother to him

But I don’t waste any time hating Autism

Wednesday, February 2, 2011

Bits of January

January has been a busy busy month
But I wanted to write down some bits of January so I dont forget

Snow

We are getting a LOT of snow

Especially in our cabin

DH is just sooooo cool when he puts the snow chains on the car tires - I am seriously impressed



We have inches and inches of snow and R having recently read a book on snow gives me random bits of information about it -

"Snow is cold , Snow is wet"

We have been noticing how much he likes books on facts , rather than stories. This is the exact opposite of me as a child

Since we are trying to teach him the "wh" questions we have switched to books with facts and he just eats them up

But of course we will need to get back to stories as this is what he really needs to get
Friend

One of our close friends is visitng from South Africa

Lots of fun chatting and drinking endless cups of ginger tea. He loves to take walks which is so awesome.

DH , I and he have known each other now for almost 16 years and he is practically family

He has just returned from South Africa and wants to experience the great american road trip.

He plans to  drive the 140 all the way to the Grand Canyon.

We have loads of fun planning out various road trip options.

America is brimming with such stunning  beauty wherever you turn, that we are spoiled for choice .

We have told him, though, that if he feels homesick and  wants to come back the guest bedroom will be made up and ready for him

Travel

Unfortunately I need to travel a lot this month .

This gives me such pangs of guilt - especially since R is having loads of testing these two weeks and his therapist and teacher write in their notes that R appeared stressed and anxious . And that miraculously he has amazing days the day after I return. My cup of guilt runneth over.

Thank goodness DH is a SAHD- and a pretty amazing one at that -  as it provides our sensitive child with a stable base

Wedding Anniversary


We have been married for 12 years this January and I can honestly say that our marriage is just wonderful

Have you ever seen pictures of an Indian wedding ?

Well in the Indian culture the bride wears red and gold ornaments , the groom rides on horse and god of fire is witness to your wedding vows


People talk about the first year of marriage as the best .. but I feel like I am loving our marriage more as time passes .
I think we become smarter as we grow older

In our 20's if someone were to ask us the question  of who we would want to be on a deserted island with - we say that we would want to be with Brad Pitt

In our 30's on  we know that if we were ever on a deserted island, I would want to be with someone who could fish, light a fire, make us smile, love us and be a friend

Progress

Despite the stress, R continues to slowly and steadily progress

He is very interested in number sequences now and makes number patterns . he counts in 3's and 5's and 10's

Here he is making a set in 3's so  1,4,7 and 2,5,8 and 3,6,9 - then he reverses them. The interesting thing is that he can start from where-ever - so its not a memorized pattern


We have our Therapist team meeting on Sunday

We make amazing chocolate cupcakes with cream cheese icing - that I urge them to take home as I know I will devour them willy nilly

His speech therapist has done an evaluation

At present he has an expressive language of 3 years 6 months  and a receptive language of 3 years and 8 months

We are overjoyed ( especially since our therapist told us that R was stressed during the test ( as I was out of town and did not answer many things that he knows )

Not too  long ago I remember crying over a report which stated baldly that  his  receptive language was 6 months and expressive was 0 months ( yes his expressive language was that of a new born )

Even a year ago, he was at 1.5 years

His ABLLS are also being conducted and he has made dramatic progress in that as well

Yes chronologically he is 6 years and 2 months old - so he is still very behind - we are well  aware of this

But we have truly shifted our focus

We look at the distance he has traveled and are so proud of him and so grateful to God

For he works so hard and has such courage

As one of my favorite sayings goes.

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

Floortime Lite Mama

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