Thursday, February 23, 2012

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.

Saturday, February 11, 2012

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 

Sunday, February 5, 2012

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 !

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