Friday, March 30, 2012

Autism and vacation

Last week we took a small vacation

Some bits were were great and bits of it were okay

On the great side, the weather was great ,the ocean was just magnificent  the apartment we rented from VRBO was comfortable and on the beach

On the not so great side................................................R does not really like change.

Like Sheldon Cooper of the Big Bang theory , R would say

"No, it's not going to be fine. Change is never fine. They say it is, but it's not."

 Plus he was also unwell ( Towards the end of the week we started to be incredible worried about this - always slim  he has become incredibly thin, had no appetite and then  we found out last week that he had giardiasis- which he is now being treated for  )

He was great in the long car ride and thoroughly enjoyed our stop at the gas station - I am always entranced by his pleasure in the small things ( like soda fountains etc )


The sea was just stunning and just a 2 minute walk away from the condo

Sunsets were stunning
We flew kites

had little picnics on the beach ( in order to take R favorite activity - picnics and combine them with the new thing- sea )

R enjoyed the sea under protest

With the gorgeous Atlantic ocean behind us - here he is asking me if we can go back and go to Kangaroo ( gas station with fountain drinks )
R and I have been reading a book called Se Shells on the sea shore .

This beach had a lovely low tide - the tide would take the ocean almost a mile away . I found it so dreamy to walk on ground that was inside the sea just a little while ago

We got to see walking sea shells ( the ones with the mollusks inside )

This is beyond magical to me

We left many large sea shells behind because they had animals inside them - while DH ate a  oysters for lunch - it still felt ethically wrong to take a shell from a creature ( like taking someone's home )

One shell stayed in our condo for almost 2 days - until I decided the creature inside was surely dead and decided to wash it in warm water and then the creature came outside

I felt so bad - but DH even though it was late in the night went to the beach immediately to put the shell back in the ocean ( at these moments I fall in love with my husband once again )

Though we did get plenty of shells ( most abandoned on the sand- dunes from  past storms )

What R enjoyed most about the trip were his familiar things . Plastic playgrounds


Restaurants
Knowing that family time was not really going to be awesome - DH and I gave each other plenty of alone time on the beach

Harbor Island, SC  is a gorgeous undiscovered beach with no crowds

DH read books and I took long walks

Felt the wind in my hair ( pics of me taken with my phone camera ) 


Listened to the ocean

Followed the seagulls

One day R was particularly whiny and DH and I were just over it - we wished he would just enjoy things and not always be so reluctant to try anything new out
R knew we were upset so though we took him to the playground ( 20 miles awasy as per his request ) - he sat quietly in shame

But then DH and I asked ourselves - is it really fair to expect him to enjoy the things we do ?

We went to dinner that night and R soothed himself with some math jokes

 He made an adorable little heart with 2 dashes and a 3 and said "heart go higher higher "- my heart just went out to him and I thought about how difficult it must be for him to have to always  want things to remain the same and not have that happen


While we cannot let his world become smaller and smaller - we need to expect and accept the fact that R does not like change but that still change is good for him

But should vacation be about relaxation or growth - I suspect it needs to be both

Next time we plan on bringing the Wii with us

As we got in the car and were on our way , I could see the stress leave R's body

He was in the car with his seatbelt on 30 minutes before we were ready to leave

And as we drove through the gorgeous South Carolina Roads


he was finally relaxed

He slept and DH and I discussed how we would make our next vacation more "successful" .

We should definitely go to a city and stay in a chain hotel( Hilton is his favorite )

As we got closer to his beloved old "new cabin new house" to spend the next three days and he woke up, I asked where he would like to go on the winter break

"Beach" he answered firmly


Monday, March 26, 2012

Accepting Autism

The other day I met a parent who is going through the initial diagnosis of autism

I found myself recommending the usual bibles of new parenting in Autism

You know .. "Son Rise" .. "Let me hear your voice" .. "The boy who loved windows"etc

There are thousands  amazing  autism books - why are these handful so popular?

I think the answer is that these are the cure books

These books  use the war metaphor

The enemy - autism

The warrior - you

The  victory - cure

These stories -the cure stories -have become the legend in autism land

The thing is ....I have never met a recovered child

I have met plenty of children who have made lots of progress though

Why is that not good enough?

I wish I could find something to say to a new parent that is realistic

That the cure conversation will fill them with energy in the beginning and drain away their joy with guilt and questioning themselves in a few years

That is about progress

I wish I could say these things and still fill them with optimism and hope(for there is so much to be hopeful about )

I wish our conversation would be all about helping our children and not about curing them of autism

"Every parent of a child on the autism spectrum knows this feeling: I've done everything possible; why isn't he better? The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."

Autism's Parent Trap , Cammie McGovern New York Times, 2006 


I write on the Specialism website of the amazing Danette and Tiffani on this topic here 


Thursday, March 15, 2012

Are you my mother? Are you my therapist?

Dr Boucher is hosting a really interesting topic for her carnival this Spring.

She asks "You know your child best. Does that mean you are the best person to teach your own child?"

She invites readers to share their  teaching success with other parents.

We recently had our 5 year Autism Anniversary .

Over the 5 years , I have had different feelings on what my role as the mother should be!

In the beginning of my autism journey, I read the usual books with their usual message  that said "dedicate all and you shall recover your child "

Though our life centered around R, I always felt that it was not a 100% from me

Life, work ,chores, our own needs etc   kept getting in the way

But always in the back of my  mind, I wondered what would it be like, if we  truly dedicated ourselves relentlessly  to a full Floortime lifestyle -

So for Dr Boucher's Carnival I decided to experiment with one day.

This day we would lead the ideal Floortime life

I would keep  Floortime uppermost in my mind all day - not distracted by chores etc.

I would  reflect on my own thoughts and feelings, as I went through the day

Here is how the day unfolded

In our family, Saturday is the day of no work , no therapy and no chores .

 We are usually at the cabin

So its really an ideal day for this

Saturday dawns beautiful and sunny

DH and I wake up with R bleating that we need to wake up and come downstairs ( what R loves above all else is for all of us to lounge in the bed downstairs watching TV while he plays on the computer! )

So we talk about where he wants me to go and what he wants me to do and can I brush my teeth first and can I wear my dressing gown etc   (if you are wondering about the lack of "why" questions,  he does not understand "why" questions )

I make DH and me our morning hot drinks (hot water and lemon ) and R strolls in to the kitchen

He demands a Sprite cocktail and as he is sitting on the floor and patting the floor .. I pick up a floortime cue and we sing the "Pat pat pat "....(little Einsteins theme song where these 4 remarkable children travel the worlds -and sometimes outer space  to solve unbelivebale problems)


R completes the cue and sings "then raise your hands as high as you can  and say ....Blast off"


This of course is another perfect cue
.
So we  start making everything else in the vicinty go "higher and higher" (another Little Einstein theme  which we often repeat )-

 I add twists by creating little conversations around whether the  unlit fireplace to fly or  the lit one

Of course he wants both

So we do both
DH  coming to get his drink sees what R is doing and makes R go "Higher and higher" to much squealing and delight
 R demands junk food for breakfast and we floortime to bargain for a compromise.( a healthy muffin and a few Doritos )

We have a little conversation around how he wants his breakfast served ( though I know exactly how he wants it as he is mad for being served on trays )

He demands  a little bit of Wii (many back and forth opportunities - what game does he want , does he want to play alone or with me )

In all this playing , DH's waffles and sausage are overdone.

I offer to redo  but he eats them with good grace while I take my latte upstairs and shower and dress and make beds

We are going to go to the Outlet Mall to buy R's winter wardrobe for next year (Though, when I am there  I get shoe-madness  DH whilst making fun of my boot-obsession - buys himself many shirts as well )

In the car , we talk about what R will get if he is a "good boy "(lunch at the Golden Arches )

In the car we point ot everything we see (and there are some gorgeous sights as Spring is here )

At the mall, we go to the Jockey store

While DH is browsing on the shirts, R and I floortime

R teases me by pretending he is crawling
 He hides inside the clothes racks and I find him - (dont u just love that face?)

He bargains to stop at every Coke and Sprite machine (even though he cannot buy anything till April - a pact between him and me - he can atleast look at the machines )

And he  protests if I get him to move away too fast ( another Floortime opportunity as I can point out the other vending machines that are coming up ).
R and I look behind the vending machine, I know he is wondering about where this endless  and magical stream of coke comes from?
We talk about this but I cannot bear to tell him about the men and women who fill up these machines. I think  it will be like telling the truth about Santa.
R straightens us up ( this is new - he has started making sure we have our jackets and shoes when we leave the house )
We go to Toys R Us and Play with all the toys (endless floortime opprtunities here )
R plays with all the displays
As he has been an angel - we go to Mc Donalds where we oder both Coke and Sprite (one to drink and one to smell )

We play in the play area

We go home and relax a bit

Guys, I am EXHAUSTED already

 I try to energize myself up as  this is only half a day yet - so we go for a walk (i should say go for a "drag" as this is what we have to do for a reluctant R)

But once we are on our way , he points out places he wants to sit and we talk about safe and unsafe places
The Sprite can he is carrying (as a toy) is becoming an encumbrance.

So DH does a little pretend play theme with him putting the Sprite can "to bed" and saying we will come back and "wake it up "

DH sees a plank thrown down the mountain and he really wants it for one of his projects

We argue about its size and so he climbs down the mountain to retrieve it
As I heckle  DH, R sits and watches the sun on his hands


We measure R and the plank and it turns out I was right about its size (that its shorter than R)

(This little episode is nothing to do with Floortime but I just wanted to point out this priceless moment as I am rarely right about any practical thing )  !!
We return back to the Cabin - we  "wake up Sprite" and R constantly bargains to be carried(another set of Floortime exchanges takes place here  )
After we return to  the cabin , R reminds me that I had promised a picnic in the morning

Getting our picnic basket loaded up is a breeze and provides plenty of conversation chances - drinks straws snacks.etc ( while I know EXACTLY what he wants - I still add little twists  by planning the opposite of what he wants - "You want carrots?".. "No.. No ... bunnies eat carrots")


Dh and R practice throwing  stones- DH teaches the "over throw "
but he would rather "underthrow"
Its night ..

 I get  all the ingredients ready for DH to make our omelettes .

DH fixes R's cheapo train

R is entranced
 Then it is time for bathtime, dinner and bed ..

While I continue to Floortime my way through the end  of the day ,  I dont take any pictures

As the day progresses .. so does my exhaustion

I really enjoyed doing the experiment for Dr Boucher's carnival .

But I was also glad that the experiment was over.

Because even in the best situation possible- being in therapist mode all day was EXHAUSTING.

I found myself frequently longing to  just read a book

Or watch a show with DH.

Or do chores

Or do nothing

I kept feeling not guilty for wanting that. In fact feeling sure that it was okay to want that!

 I started the day "trying out" what would it be like if the only thing in my life was being a parent therapist

I ended the day thinking that even if I had that choice,  I prefer what we are doing now

I am glad we have chosen a balanced approach!.

That there is a whole team of professionals who is helping R.

Each professional and therapist bring  their unique gifts to the party, not just because of their skill set - but also because of their experience and perspective

In some part they are valuable, precisely because they are not mum and dad.

And because they allow DH and me to have a fuller life

For R to learn....does not mean that I and DH  have to teach it all

To  answer Dr Boucher's question -  while we may know our child the best, we are happy to not be the only people on R's team !

There is one final advantage to this - ( which DH points out as I was discussing this topic over our date lunch yesterday at PF Changs )

That it allows DH and me to sometimes be just  mum and dad.

Everything that means

And nothing more

There is a gift in that !



This post has been written for the fabulous Dr Boucher's blog carnival and she will host it on the 17th

Saturday, March 10, 2012

The last days of winter: Of small pleasures & lazy floortime

Ahhh what a thrill it gives me to write the name of this post .

 This winter has been one of the dreariest .

 No delightful snow , no sled rides .

Just great  endless grey skies and dreary rain

I am collecting pictures from my iphone  and piecing together the last days of winter from these


Small Pleasures 


The other day, while coming back from a work trip at an airport store, I and a collegue are browsing over a rack of magazines

It suddenly occurs to me how much every magazine that is for women is actually "from"women

Everything is about how to be in better shape, more organised, perform better

There is actually a magazine dedicated to the posterior- called GLUTES.

Even summer is not to be looked forward do but has to be met with performance anxiety because its  now "swim suit season"

Why do we do this to ourselves?

(DH is someone I often envy as he has a very simple attitude to life and it really comprises maximizing joy and not caring about what anyone thinks.  )

Surely we are not put into this life to clean kitchens, cook meals and lose weight.

I have been looking for things that give me pleasure just because they do.

Like my clothes

So one day I spend an hour arranging scarves in a drawer that no one will see but me

and

I make time to take long walks whenever the sun is out and take such pleasure in the flowers and Jane Austen on my Iphone

Two of my friends in the neighborhood I make impulse visits to.

Always I think that we dont have time, but everyone has 10 minutes

One of my friends has two auties and another has a husband who has been severely ill for a while  .

Both these women inspire me and we have the special bond that all people have been made to take the "scenic route" in life

I prioritize date lunch whenever I can - even if I have just an 45 minutes !


I and DH are also trying out new lunch places- we always try to see if we can avoid talking about work or autism logistics (though this is unavoidable to an extent )

Sometimes happiness comes spontaneously, despite all difficulty  to me .

Those times I feel like the Camus line "in the midst of winter, I found within me an invincible summer "

And sometimes I have to work really hard at it .

But always I focus on it

FLOORTIME

We are doing a peculiar kind of floorime these days -

A lot of loving and hugging and kissing and physical activity  .

Lots of lazy outside time anyday that there is sun
 Lots of impromptu picnics

And walks

I truly think that there is something in the unconditional acceptance and taking joy in a person's company that is deeply therapeutic to a child .

Its as though the child realizing that you do not have any agenda - opens his heart even more

R is seeking me out more and more - I literally cannot do anything without him at once bringing whatever he is doing to me (here I am trying to do some stretches )




(DH says he looks like a baby monkey in this picture - and I agree )

On the weekends we spend a lot of the morning lounging around lazily ... here  he is coloring in unmade bed even though we have been awake for a while

I resist the inner voice that tells me to "get ready" (for what?)

These luminous moments are the whole point of life

Strictly speaking, this is lazy floortime

Too much following the lead .

Too little building on it and challenging.

But we are getting a lot of joy out of this.

And, even though he does not seem so happy about school, there are some things that are spontaneously developing in him

For instance, for the first time I can make him interested in something that is interesting to me

This is a very sophisticated part of joint attention

For the first time in my life, I had the experience of driving with R in the car - have a fire-engine pass by making the sound - and pointing it out to R and R looking and telling me what it was

The other day for the first time ever, we played a very brief Hide & seek

Its something I could not have ever imagined  - that R would close his eyes and count to 10 while I hid and then he would find me

How did this magical thing happen?

These things are wiping away all the worry of some of his reading comprehension challenges at school ( which we are working with his therapists diligently on)

I truly think there is something about being fully present with all of our mind and heart .

Of taking great joy in the child we have, not some 2.0 version of that child - is very healing to both parent and child.

As I put R to bed , I firmly erase all the running commentary of the multiple to do lists( autism list, office list , chorelist , social lists) in my head

(How many precious bedtimes have I wasted thinking about the dishwasher that is waiting to be loaded?)

I think just of this sweet child and how much we enjoy him


Tomorrow there'll be so much to do
So tonight I'll drift in a dream with you
How long do you want to be loved
Is forever enough, is forever enough


                               Lullaby Dixie Chicks





Floortime Lite Mama

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