Thursday, February 24, 2011

The Last week of February: Floortime Evenings


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


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


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 to you later "


Anonymous said...

You're right, the media seems to focus on the more severe forms of autism. One interesting side effect of this for me was that I never once suspected Andrew had autism and didn't believe the EI people for months when they told me he did. It just didn't look like anything autism-related I had seen on TV or read about. I think there needs to be more out there about the fact that it's a very wide spectrum, and there are difficult things for families on both ends of that spectrum. Both sides need continued support and funding.

Love your treefort, by the way!

Dani G said...

You are absolutely awesome with DIR. I was never good at it.
My bird has great potential at levels 4 and 5, but her sensory regulation is tough and she's just so shaky at level 1, even though she's very engaged.
We can usually get to about 4 or 5 circles in conversation and then she's done.

autismand said...

This is really interesting. I like reading about DIR, it seems such a gentle and natural way to do 'therapy'.

Allison said...

You do such a good job of making Floortime seem accessible! I'm trying to get through "Engaging Autism" right now and wow - 50 circles?!?! Thank you for all the ideas. Also - I think your voice is a beautiful, positive reminder of what can be.

Kim said...

I like reading your descriptions of floortime because I realize that I do a version of this! I had read about it a long time ago, and reading your post refreshed my memory. I think I need to go back and read more. I was so overwhelmed at the beginning of the diagnosis, reading everything, trying to figure out where to start...

Love the last line. It's always good to remember just how far they have come. It makes everything light up in a way that not many people understand.

(I also tune my husband out sometimes while he is explaining!)

The FC Block Party - Lego Club said...

Love your writing! My son is almost 11, and I did Floortime with him from the time he was a toddler. I loved the way it allowed us to connect. He too is a remarkable boy. Still loves to smother me with kisses. Yes, most 11 year olds are not wanting to show affection to their Moms. Glad he's mine. : )

kathleen said...

Lovely and real as made me laugh with your description of Target..standing there in sweats holding dandruff shampoo..heehee..been there so many times. :)

Anonymous said...

K, you have given me much needed laughter this evening! Thank you so much!

You are also the best educator! I think I will direct a few others to come here.


Anonymous said...

"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."

So smart you are. :)

And a GIANT CONGRATULATIONS on the independent, appropriate PLAY!! Wow!!

Can you tell me more about this play therapist, please??


Rachel said...

What I love, dear friend, is that I can smile and sigh and chuckle my way through your post - then come to your comments and see where you are making a very real difference for other parents.

Just read them K. You make people think. You make them see the successes and beautiful things about their own children. And you give them hope.

And goshdarnit, somedays I just want to hug you! (Ok, I would SO totally hug you every day if we lived closer :)

Brenda Rothman (Mama Be Good) said...

K - we do DIR/Floortime with our son, too. To your readers who wonder - I will say that training or counseling from a professional on it is important. I would never have been able to do it successfully from just reading the books.

That said ... have you ever read Playful Parenting by Lawrence Cohen? (I just keep going on ad nauseum about this book). But it is one of the best laymen's description of Floortime in action. And so easy to read.

And to your readers, too, who wonder: Circles are not just verbal responses. Circles can be nonverbal - and it's important to remember with our kids - more important as they are younger or simply challenged for that day. A game where you hide an object and the child finds it ... or where your child puts your arm down to elicit one sound from you, then moves your arm up to elicit a different sound? Equally as valuable as verbal.

Love that you take on explaining it. ((Hugs))

toonietoons said...

K...I absolutely love you didn't know that already :)

Gypsi said...

So awesome! I love seeing him playing with the garage!

We had a nice conversation circle a few days ago, which was so pleasing.

I just love reading this!

Anonymous said...

Looking back I am soooo thankful that I had no idea what Autism was when we learned that Daniel had it. We had done some evaluations because something seemed off, but no one else said "autism" to me and I didn't know what they were testing for. I guess I had a vague sense that Daniel wasn't developing quite as fast as normal kids so when the girl evaluating him referred to "the spectrum" several times like that answered everything, I finally asked her, "Spectrum of what?!" I think it's funny now (you should have seen her face, poor thing!), but really, I'm glad I didn't know because I had no fear, only sadness that Daniel's quirks were "symptoms".

I loved the floortime examples and the reminder about the circles of communication. You're right that the more you do it, they more you want to!

Daniel had trouble with the swings and a bike too.....

oh! And I know what you mean about when people say something (positive) about Daniel if they would feel the same if they knew he has Autism.

danette said...

I love the "all done sad" that sounds so much like something Bitty would say in a similar situation :). I love reading of R's progress, he has come such a long way!

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