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

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

Living in the now

Worry about our kids future is something all parents do

But for mums and dads of special needs kids –worry takes on a whole new dimension

We worry about what the future will look like.We worry who will love them, when we  are gone

I thought  about worry yesterday.

 When I read a friend’s blog and she talked about the worries of her daughter’s future .

Another mother commented on her post by linking on to another article.

In this way, I landed on this beautifully written depressing article.

You know the kind of article I am talking about

The first-person account of a worst-case outcome

As soon as I clicked on the link, I recognized it.

I had already read the article 3 years ago .

It was such a beautiful article written by a sensitive and caring mother .

 I remembered how sad and hopeless it had made me feel  3 years ago.

But not this time.

For now I have realized, the importance of censoring what I read on the internet

Of reading, but not internalizing

Because many of us have the “extrapolation problem”

We read about one bad outcome and imagine that to be in our future

We have one bad incident with our child and we extrapolate that into an extreme.

The truth is that no one can predict our kids’ future

There are no guarantees of what is to come

Any rational being can see that this generation of autistic children is being supported like no other generation  and so we really cannot predict based on past generations.

But even besides that point

We should  hope for a better tomorrow because  a hopeful way of being, is an end in itself

A most powerful choice is our choice of what we focus on and what we think about

What we focus on is what will grow

I am constantly being interrupted in the writing of this article as my son is urging me to pack a picnic.

I listen to the eclectic list of items he thinks should be in the basket

I think how grateful I am that this magical child has taught to me to live in today

For its truly a gift of being on this road .And of being mum to R

Tomorrow will come when tomorrow comes 

For now there is the joy of today 

“Its not what if.. Its what’s now “

 Author unknown 

This article is written for Hopeful Parents 

Mischief

R has always been such a good boy

Never naughty ( whiny and mewly- yes! but not naughty )

But this is changing

Mischief is coming in

He plays like a toddler sometimes

The other day he was hiding underneath a blanket squeaking "look who is hiding"

( since the voice is eminently recognizable and since the blanket was shaking like an surface of a stormy ocean -neither the identity nor the location of the protagonist was an enigma - but I still enjoyed  )

He likes to do little picnics parties by himself

These days he has been doing all the Coke Sprite Menthos Experiments

We are experimenting with big bottles and little bottles

And with  "investing"

He has  of course chosen instant gratification and purchased his entire quota of bottles for the month of March in advance.

I have him on my Iphone video committing to not purchasing any more beverages in the March - this is going to be a great exercise in learning about instant gratification and postponing gratification.

He creates a kind of transportation device to take these bottles around the house

The next day  we do an experiment - DH drills holes into the caps

When DH's idea of putting a hole in the cap did not work - R quickly does his own, more successful trick - he puts THREE  Menthos in to get a much bigger fountain going

He also does a new experiment ( copied from the omniscient you-tube) where he just shakes the bottles and threw them hard which also caused them to burst

R wakes up early this Saturday ( I do not know how he does this every day - we need to shake him awake every week day - but on the weekend he is up early with the birds )

He is started to steal candy and so

when I go to make his bed later - I find all the empty Starburst wrappers

There are patterns on the floor in every room

Every room  is a mess

While I am spending so much time cleaning - I do not resent a minute of it

Our son is finally playing !

And so the report card that has come home with an "N" in math ( needs help) is not as worrying

Mischief is a milestone.

And while the mischief he is creating is coming at age 7 and not at 3 - its no less sweet

In fact its even sweeter because I never knew that it would come

I always remember what my friend Jos said about her daughter L( stroke survivor )

"I believe L will do everything .. she will just do it on her own timetable.. its okay .. there is no hurry .. I will wait"

Helping Autistic children learn to speak and communicate

Many  autie baby books stop at the section for" First words"

We left it a blank.

Should we write the few words he had before regression

Or  the 6 words he had from the age for 4  to 5

Or should  we write about the thousand words he had at 5

( Mostly, I would like to write in the baby book about how much R taught us about language.
 All the   love he gave us  without words, those first 5 years. 
But there is not enough space in the baby book for that. 
So I write about it here )

The art of conversation  is a complex thing which takes much practice , but apart from social language proficiency - R is kind of a chatterbox now :-)

I rewrote an article about our journey to words for the amazing duo Danette Schott and Tiffani on their new website specialism here

I am going to break my rule of always posting content not just a link cause that is what Danette asked me to do and since she is so fabulous I am going to do as I am told !!

Here is the link

Please do pass along to any autie parents you know whose children are pre-verbal.

Bits of January and February: Getting back into Floortime

January and February have been hectic and I am piecing them together from pictures before they are gone from my memory

Like everyone else we have also had the sickies -

Especially R  has not had a good stomach for almost a month .

He keeps getting okay and then keeps getting worse .His appetite is very low  Its very depressing .

The skies are almost perpetually grey .

Sometimes watching the mist roll over the mountains is beautiful but I yearn for the yellow of the sun

But enough about the depressing bits.

I read somewhere that one of the most powerful tools in life is focus. ie you can change the way you feel about your life by shifting your focus to the good things

I have always found this to be the most effective thing !

And of course there are lots of nice things that are also happening with R & us

Winter is full of its many pleasures of real wood fireplaces

My 13th wedding anniversary where we tell each that we wont get each other anything  but DH gets me these gorgeous flowers ( how lucky am I ?)

I usually have to travel quite a bit for work but this month I have not traveled at all and DH and I have had many chances to have lunch together

Stuck in a  Rut 


I am stuck in a rut with Floortime

We are really not doing much

We try to make sure that we spend time outside the house ( away from our screens )

So we go for lots of walks

To the library

And for errands

We also employ the other crutch when Floorime does not come easy - we do fun things outside

We go to the indoor water park at an ASA event and R has so much fun

and I try to make everything I can very interactive

But I am depressed

I have these periodic moments where I suddenly realize  that there is so much to do for this most precious of all things  and we are  not doing it

( Though I sound like i am criticizing my parenting, I really am not. I honestly believe we are very good parents..Sometimes we are just not doing enough )

I just found myself looking into a training program to go to ( which is my usual coping mechanism when I feel stuck )

(This time I was looking at the Sonrise program in June - Have you read the book by Barry Kauffman ?- its really great and I have also listened with great admiration to Raun Kauffman's interviews,.
I was really lucky that I picked up Dr Grandin's , Tito's and the Son rise books  - when we first had our diagnosis.
Our idiot psychologist- we never went to see him again - recommended a rotten book called "The World of the Autistic child" by Bryna Seagal - outdated book and a fountain of doom and gloom  ) .

It sounds like a lovely program and would be like going on a retreat ( I have read quite a bit about this and Floortime and Sonrise have many commonalities that make them appeal to me and DH ) .

Sonrise especially focuses a lot on happiness and acceptance and I feel I need that now .

But its a very significant time investment - also I worry if it may be a little basic program is really for us now.

DH is looking into it as his analytical brain holds us in good stead when we are looking into new things that may help R.

Though the program I know would benefit us,( and indeed we may still go )   I know that this is a stress response -

The problem really is not the lack of knowledge and the training ( we have so much of that )

The problem  is the doing 

I remind myself of my old mantra "Seek less, do more "

 I tell myself that I just first need to get back into the Floortime  habit ( for Floortime is a habit )

We need to going out to play every evening.

Otherwise the evening whizzes past in TV and chores .

Dr Greenspan used to say that "half of the game lies in just showing up"

I tell myself that I can at least do that - show up !

R plays a lot of interactive games these days but at first they are very repetitive

Like he will say with great mischief in his eyes ( don't you love his face? )

R: Eat a ..... stick

Me: Gasp ( mock horror ) ... R what is this .. no eating stick !!!

R : giggle and laugh at this

Then R will say : Eat a cloud

I have to respond with the same pattern otherwise he will cry

Or he will write a fact that we all know is wrong like this one where he says" the banana is blue"

And I have to squeal "What ?!!!!" and this will cause MUCH amusement

The banana is blue 

You get the picture -

Now there are several patterns -

But they are all patters that once formed will have to be "performed" in the exact same way !

This will look very interactive from the outside - but its the exact demonstration of the quality ( fixedness) that floor time is most supposed to help with 

So while there is a lot of back and forth going - it is not Floortime

Dr Greenspan used to say "if you know what is going to happen next .. you are not doing Floortime "

I get some advice from the the Floortime yahoo  and other Floortime friends

And try to build on it

For instance we play on the slides with Coke and Sprite ( one of his enduring obsessions )

Even better-  - one day we do the Diet Coke and Menthos experiment ( he has been watching this a lot on youtube - the you-tube History is a real window into his world )

Slowly and steadily we are climbing out of our rut

I keep forgetting is that Floortime is also addictive 

For me AND for R

In just a few days, R is and seeking me out trying to make me come out to play with him

Eager to go out

The other thing I had forgotten is how much fun I have playing with R and seeing the little connections he starts to make

How many times do I need to learn the same things again?

The two cliches of "The only way out is through" and "Fake it till you make it " are both so true

The sickies are still here( DH Is going to take R to the doctors on Monday )  but my joy is coming back as well

The other day Miss G comes down to show me a Valentine card that R has made

"I told him to write to make a heart with a V and a 3 .. and write - I love you .. but of course he wrote - I love you mama"

I may not always feel like the best mum .. but I always feel like  i have the best child 

How to cope with the things people say ?

I am on Hopeful Parents talking about the difficulty of dealing with the things people say in the days post diagnosis here

If you hate clicking links ( like I do :-) ) here is the post



How to Cope with the things people say?

One of the hardest things for mums and dads of auties is  what I call  the “coming out”.

Of disclosing to the world that your child has autism

The breezy question of “Hows the little one”?

To which you have till this day, always replied “doing great”

Do you now just state baldly “ well actually he has autism now !”

When we first found out, I told just my very close friends ( those with who had discussed with me the all consuming  “does he/doesn’t he” of the months before getting an official diagnosis of he-does) .

 I told them these close friends by email and I also told them that I did not want to talk about it at all.

Many people said kind things "Must be hard.. how can I help ?"

But the words of other people ( even when  well meaning  ) hurt so deeply

"Did you see that Larry king show" ( where the mother was taking about killing herself?) 

"I read this great book - this mother stopped giving her kid cheese and he became unautistic "( thanks for letting me know )

"I used to think i had it tough .. after seeing what you are going through -- I am going to stop feeling sorry for myself "( I always planned to get to the bottom rung of the pity ladder )

Will you be taking him to Vegas to play the slots?

Just curious.. if you could do it again what would you do different …You must really regret vaccinating your child( ouch !!)

Do you think its because you were so stressed when you were pregnant?”( what a comfort, knowing that it may have been my fault !!) 

“These are chosen children of God!” or –“this is just a penitence for past sin” or “god has only given this to you because you are strong”( wasn’t feeling so lucky to be chosen )

And the worst "Soon they will be able to screen for autism in utero and we can prevent autism "

How it hurt!

But the truth is that most people were  just looking for something to say.

Often ,in fact,  they  were trying to read my attitude to see what would be  right thing to say.  

Should they should sympathize or offer something uplifting?

Sometimes, of course,  they were not thinking at all

But, almost never, was anyone looking to hurt

The intent was usually kind

All my life I have been deeply in love with words.

So much of my childhood filled with pleading for more reading time while my mom told me I was ruining my eyes and threatened  to turn the light switch off !

But being loved so deeply by R - my child silent for so long - taught me to look beyond words 

To the intention behind the words.

And it makes all the difference to how I feel about what is actually said


The second thing that has really helped, has been falling back in love with my life and realizing once more that we have the best kid in the universe.


.And being able to truthfully answer" he's great ". A cue to starting conversations that focus on the positive and the possible 


The third thing that has made a difference has been to teach myself to be a little less sensitive 

The other day an elderly aunt commenting on R’s talking asks” will he always talk like this or will he improve any more”

My mum, on hearing this, quickly comforts me “oh she is a broken drum ( Bengali proverb) no one knows what she will sound will come out of her next.. let it roll off your back “

And today its easy to do !