Saturday, June 27, 2009

SOOC Saturday - Hope



Here is an intricate ( for a 4 year old ) crossword I found on the frig a couple of days ago

I thought back to another time

Two years ago

Though it seems a lifetime away

When we were in the midst of all the diagnostics and evaluations.

I remember us filling out the sections on "Cognitive"

We were so alarmed at all the things R did not do - Stack blocks, string beads etc etc.

I often wondered - is it me ?

Am I not sitting down with blocks teaching him to make a tower- with one on top of the other?

Stringing beads??????

We did not even have any beads in the house! Were other parents teaching their kids arts and crafts all the time ?

But even in the gloomy times full of doubt and fear, we insisted that R had no cognitive impairment

"He has intelligent eyes" DH would say ( as though that settled the matter )

"He Bends the Dumdum so he does not have to tilt his hand" I would say triumphantly( Hence Proved !!!)

How patient and kind these evaluators were, (though I do wonder whether they felt pity in their hearts and I am glad I do not know what they wrote down in those notebooks )
Nevertheless, we have always clung to the idea of R's cognitive potential.
Even in the bleak times

And none of his therapists teachers ever say otherwise.

( not that people with MR have less worth - I love the persons with MR I know - in my eyes - they seem to have their own unique potential)

How do you measure the intelligence of a child?

A child who may not understand your verbal question or has no desire to impress you?
I think intelligence tests for young auties especially speech impaired auties are bogus!
And I do not buy the idea of "functional IQ either"( ie if you are not able to take a test - aren't you at least functionally low in IQ? )
I would rather focus on potential !

Of which I believe R has plenty.

And be full of hope

All will be right,
Look to the light.
Morning was ever the daughter of night;
All that was black, will be all that is bright,
- Author unknown


Pfor more SOOC images or to participate yourself visit Melody at "Slurping life"- her link is on my blog list

Tuesday, June 23, 2009

Magic Kingdom and Sea world trip

We are back from a lovely vacation in Disney and Sea world
We spend one day in Magic Kingdom and two days in Sea WOrld ( as the second day was free)
We really had a blast and I am so glad we went. I am putting up some pictures. If we look sweaty and sticky in the pictures - its because we were.
It was India hot and that is saying something.

"Expect it to spill" is my motto while on holiday.

And really with this in mind its so much easier to enjoy the trip instead of niggling about all the little things that always seem to go wrong on our vacations

Here is what the trip was like
Day 1 : Magic Kingdom

We start out the day badly as the traffic is bad. Our hotel is 28 miles away- as it was the venue of the Floortime Speech conference that was canceled.

DH is especially pissed off when we realize that there is no real reason for the traffic on our side of the highway to be so slow. There is an accident on the other side of the highway and people on our side are slowing down to see the scene !!!
But I make him laugh by suggesting he slow down so I can look at the accident more carefully

Here are we on our way across the river by ferry into Magic Kingdom
How do I expain the bliss of R's kisses?

Its the easiest thing in the world to love him madly

As the heat hits us we are simply delighted to see the morning parade - its amazing to see Mickey and Minnie and Snow white .

Though my head knows that these are all actors in costumes, I feel tears pricking my eyes and I am glad I am wearing sunglasses and n
The Magic castle looks very magical


Our first stop was to meet the fairies.In the waiting area the attendant is asking a small girl who is dressed up like a fairy that she has to wait to become smaller and smaller before she can meet Tinkerbell.
The little girl believes it and is trying to shrink down.

Some instinct tells the attendant not to try this with R and R is happy to see that there is something to read.



The sign says "Follow the Magic "
R does not care for the fairies at all. He can not wait to get out of there!
Here you can see the fairy all grumpy because of the unexpected response.

Poor thing- she must be used to adulation.



Its interesting to me that now when R chooses to sit - he sits on the ledge instead of on the floor


From here we go to meet Mickey and Minnie. In our picture with them - you can see R feel Minni's boob. Its very funny


We go off to the rocket ride. I think this is something that R will love as it has planets and a rocket - R's great love. But while the ride is fun - it makes a grinding sound when it comes to a halt and I know R does not like it

Its too hot - while DH wants to go to the Donald Duck ship - I ask to go to a restaurant so we can cool down for a while
At this point one of my boys has a meltdown ( Hint : Its not the short one LOL )
Turns out while we talked about not trying to do everything in the park- my idea of slow is tooooo slooooooooow
Anyway after we talk it through we are all cheered up again
Like all meltdowns - autistic or Nt , child or adult - its all a cascading effect , the traffic, the heat, the crowds, the sensory overload and then my slow pace is the final thing that pushes one of my boys to meltdown mode.
I realise he does have a point and try to get my head out of la la land to make the most of the $200 this day is costing us in tickets
We increase our speed and do the Monsters show, the DOnald Ship ( u see R here in the ship )

And the train ride. I lose my hat on the train and buy a new one for 17.95 - daylight robbery !!!!

We do the Tikki show. thankfully air conditioned - R falls asleep and we go off with him in the stroller - I wait while DH does the Swiss Family Robinson house
We watch a bear show ( it seems now we are just randomly choosing any option that has airconditioning ) but its fun

R wakes up and we do dinner in the Pinnochio restaurant

We do a ship R is hot and bothered and clings to me which makes us both all the more hot and bothered - yet this really is the most touching part of being a parent. How your child beleives that you can solve all their problem . Feeling hot? Stick to mom

Then we go do the highlight of the trip the race cars
This R is TOTALLY and completely mad for ( thanks to Turbo Dogs ) and its hard to get him off . I want to get in the line again but its too long
We go off to the Magic carpet - Its late in the evening and starting to cool down and the magic carpet ride is just bliss

We make our way off to the parade . Its HORRIBLY crowded but AMAZING
As is the fireworks display - they even have an acrobat tinkerbell fly across the sky and I am entranced.
The crowds are huge and lot of pushing and jostling occurs.
But its still amazing
We take the monorail back. And then trudge home by midnight

DAY 2 Sea World
yesterday' heat has scared us and we leave the hotel at 3 in the afternoon. After having bought some of those hand held spray fans at Wal mart
I am entranced by the dolphin nursery

We go to see a pet show.Pretty funny things that cats and dogs too

We go to the Killer whale show -Believe - Shamu is the star and he is MAGIC . I am mad for him. Halfway through the show they decide they have had enough and go away.The show ends abruptly

After every trick they do the trainers give them fish. Its amazing that this looks so much like ABA to me . ABA works for everyone I guess

We come back at 9 for the show called Shamu Rocks. this show is AMAZING and I feel so luck y to even be there! R has fallen asleep in my lap. Our seats say "SOAK zone" and they are not kidding as in the grand finale - Shamu throws water all over us and R is surprised out of his nap. Still he adjusts quickly as the water feels good
We go to the stadium watch an AMAZING fireworks show

Day 3 - Sea world Again

In the afternoon we have a playdate with a great friend T and C. I have found T in an ASD message board and we are so alike in the way we think that she has turned into a dear friend though I have met her but twice.
We go eat lunch at Burger King

Back in sea world and by now we are veterans - we have brought plenty of ice with us. The ice will melt all day and provide us with cool water!
We eat a heavy lunch so no one needs to stop to eat and hunt for restaurants and then hope they have something R will like twice in the day.
We watch the dolphins put up an amazing show
We go to the arctic zone - this is ice cold and a lot of fun - a whole area that Sea world maintains as the Antarctic.
Gorgeous Beluga whales, penguins, puffins and polar bears.
its great to see the dolphins and how playful they are
Perfect social referencing - I wonder if there are autistic dolphins?

I suffer many pangs at how lonely the polar bear looks.
DH consoles me by saying that they are probably happy they dont have to hunt and struggle for survival.
But neither of us are convinced.
Wild animals should be free


At the walrus enclosure - I am captivated by a walrus who keeps coming to the glass. I kiss from my side of the the glass and the walrus kisses from his side.
I am thrilled!

I and the walrus exchange many kisses to the amusement of everybody around us .
As soon as DH gets the camera out however- instead of his lips the walrus has his posterior on the wall and it looks like he is saying "kiss my ass"


We watch Shamu Rocks again!

There is something about the LOUD music that always puts R to sleep . But we are careful to wake him up with many bribes of lollipops and Sprite!

(We know a 20 minute nap in the day will cause him to delay bedtime by as much as 3 hours and today we are going home early)

Shamu Rocks is a fitting finale for this lovely vacation.
I wonder whether its decent to make a majestic creature of the wild -a killer whale do tricks.
But then again, who decides who is majestic? Why is it okay to train rats and dogs and horses but not whales?
And Shamu looks pampered and happy.


We are back home the next day and though its been fun we are all glad to be home as we always are

Mercury Falling

Every day when I crack capsules of supplements, like eggs to mix into R's food, I cannot help but wonder if any of it makes any difference at all

While R continues to make progress its really not the kind of meteoric progress that I hear other parents talk about.( you sometimes hear parents whose kids will start talking within a month of starting DAN – this has not been our experience at all )

A little history on our biomedical intervention.

We have been doing some DAN since when R was 3.5 years

We did a very strict GF CF as soon as R was diagnosed at 2.5 years but showed no dramatic improvement.

DH ( especially ) and I are not the types to jump onto any bandwagon and while evaluation support options for R we have been VERY careful to look at the basic principle of- first do no harm.

Just to rule thing out in March of 2008 we did the French Porphyrin test

And found to our astonishment that R had extremely high mercury toxicity. Where all this mercury came from is a mystery as most vaccines are thimerosol free since 2002 and we do not eat fish at all .

One of the theories is really that mercury is everywhere, just some children have an inability to excrete it and they get developmental disorders

Anyway we went down the route of DAN- we went to really great MD who is a pediatrician with an autistic child - and found that R had

  1. Several food intolerances including strong intolerance to wheat
  2. Yeast
  3. And Mercury

Our DAN intervention comprises

Mostly Gluten Free

Nystatin for Yeast

And a number of supplements that help the body get more efficient at excreting mercury – MB 12, Enzymes and Probiotics,, Mercury free fish oil , TMG and Taurine

But NO Chelation – nothing drastic like that . Just the word Chelation makes me sweat bullets.

Well we just retested for mercury

Its fallen and its almost normal range . I don't know if the mercury caused his regression or not

But I am glad its gone


 


 


 

 

Saturday, June 20, 2009

SOOC Saturday: Unplanned Magic


I was crushed last week to learn that that Floortime Speech training I was planning to go to was cancelled
( Speech is a BIG deal for us right now - we are doing great on non verbal communication and pecs and just writing things out to communicate )
I had been looking forward to do it and had to move around a million things to make it happen
Of course hotel and travel was all non-refundable

Realizing that Disney magic Kingdon was only 30 miles away we decided to come anyway

Yesterday was hot

And muggy

And most of all it was magic

R shook hands with Mickey

And Rubbed Minnie's nose

And we flew on a magic carpet

Today I will see two good friends

And then later maybe see a whale or two

It seems this is the way of most of my life.

Things never work out according to plan

And I have a choice

Make the most of things the way they landed

Or not

And on this my happiness depends

Monday, June 15, 2009

A day in the life of K and R

Sunday is the least typical of our days ( no therapy for R and no office for me ) and yet its the only day that I have the time to take pictures.
We are a family of late sleepers - though in the work week I need to be up at 6 am.
So I and R wake up by 9 and loll around excanging compliments till 9.30

R sits on the toilet while I check on SOOC pictures from Melody's blog


Then I go to the kitchen to empty the dishwasher.



Why a picture of a dead fly ? DH has the cruel contraption that hangs from our ceiling - its a length of sticky paper and any fly flying past will die by sticking on it and then starving. WHen I protest at the inerent cruelty DH says What do you want me to do ...this is the only alternative to some kind of chemical alternative
(What I want him to do of course is to run around the house mashing the files quickly and mercifully with his bare hands) Or for all flies to die a happy natural death
I frequently wish for childish things such as this. Like "I wish the world would expand to twice its size so there was room for everyone and everyone was born with a chip that made them eco - conscious"etc
Its amazing to me at the age of 34 how childish my inner world still is !)
I had tried last night to get this fly out but And I am so happy its died a natural( and hopefully happy ) death !
R eats his breakfast while watching TV


I go and make ginger tea

R does a number puzzle


I get ready


DH finally wakes up and makes a mint sauce for our picnic sandwiches for we are going to the river . He has a love fest with R

Eli comes to get his mail ( and he and Lucy have been to the beach for a vacation and we have colleced their mail and watered their plants)

Eli brings a gift of some bread
As I suspected, the "bread" turns out to be a very buttery and sinful poundcake and I cut two slice and put it in the picnic basket to surpise DH with it later.

I get our picnic ready

R throws a tantrum. I cannot figure out what he wants so I take him to the magnet letters on the frig and he takes the letters TEN and throws them on the floor. He wants Ten more minutes of TV. And I suppose flinging them on the floor is the equivalent of shouting. Still he is communicating when he is frustrated rather than just crying so I give him the remote and set the timer for 10 minutes with a stern warning

We pile into the car and head out to the river

R is very sad when we pass by the airport. He is mad for airports - In fact he seems to love vast spaces that are inside like the Mall the airport etc
He spends some time throwing stones and I am very pleased to see he remembered this from our last trip a couple of weeks ago

We sit on rocks

And float on our tube

( DH is funny in that he rarely goes into the river himself but will watch us from the side or read a book or fish. Its one of his most charming traits that it appears to give him joy to see me and R having fun )


And eat a delicous lunch of mint sandwiches, Pepsi, Apples . R eats a slice of cheese toast and chips The river makes you hungry and he even picks up and tries to eat the crumbs that have fallen on the sheet

DH is (predictably) delighted with the cake and I give him my slice too. Its almost as much fun to watch him eat it and far fewer calories


Isnt this the secret of a happy marraige - taking joy in your loved one's joy? So easy to lose this in the humdrum of everyday and wondering why you always get the short end of the stick.
In the evening we have our Pizza pot luck - this is the only Indian couple we know - they have two NT kids - very sweet. And they are terribly nice. WHen I told them how important interaction with other kids was for R they immediately set up a playdate
We both order Pizza to be delivered to our house and then we start the evening with pizza and end with the playdate
I am used to parents of other Auties and I think I embaress the mother ( my friend ) with effusive praise on their kids joint attention and pretend play.
She tries to point out all the great things that R is doing. And I realise that she is thinking that I am feeling bad . I assure her that I am not and in fact rather than feel self pity we are terribly proud of R . I see in her eyes that she is not convinced. Though its the truth
Its ironic to me that all lack understanding results stems from sometimes not beleiving what people say and at other times believing what people say and taking it at their face value
I must learn to reel it in next time
Playdates are VERY stressful for R
R is stunned when I put S in the trampoline ( our sacred place !!!) with him


He is a little bit consoled when I get in but not much


He tries to move on to the next thing we do together R and I -the swing - but I put their other daughter on the swing with him


As you can see he is looking at the pool and wondering if he escapes to the pool will he once again have the exclusive world of R and mum
But it is not to be as both the girls want to get in and indeed its the puprose of this evening
My heart twists with pain at the stress in his eyes but I know this is very important for him
After a while of playing in the water we go to the playroom - So much interaction has been exhausting for R and he retreats to his computer

anddoes a puzzle - matching words with pictures

Just so you know that we dont spend all our days frolicking Saturday afternoon has been one of hard labour as I have cooked for the week( DH does all the shopping on Thursday and chops all the veggies and meat on Sturday and I do all the weeks cooking on Saturday )

We all end up chatting too long and By the time they leave it is really late and I feed R and give him a bath and he throws a first class tantrum for more TV and remote
I tell him that owing to the tantrums there shall be no more remote.
This has the curious effect of calming him down completely

I am too exhausted and so DH puts R to bed and I stay up late with a couple of loads of laundry and watch Jon Stewart while ironing

I clear up the kitchen and sweep up all the floors with my Swiffer( how does our house get dirty everyday ) Even thought its past midnight I cannot sleep until the kitchen sink is shining
I finally go to sleep at 1 and will need to be up at 6
The day is over and like all my days it busy,full of living, hard work, loving and loveliness

Saturday, June 13, 2009

SOOC Saturday - who is worthy

A few months ago we had rented a cabin.

One evening in the cabin, I was reading an email from a friend of mine - a mum of a severely handicapped child who wrote that she gets vibes from their social worker that imply that her child is a burden to the world- taking up resources and giving nothing in return ( a complete lie because this is a very loving wonderful and in fact very brave child)

Worthiness is so difficult a thing to measure

We use the term so callously !

What is s/he worth ? we say when we want to know how much money someone makes.

The email had made me think

And R had been super clingy all day. Though we had gone to have family time - I really needed a little time away from family

So I went for a walk and in the woods. It was sunset and very quiet and outside another cabin - I found a bunch of bikers ( tattos leather jackets and all ). I could feel their eyes boring into my back as I walked and I envisioned the next day's news "Weekend holiday turns deadly for tourist".

As I returned back up ( keeping my fingers on my mobile in case I needed to call DH to hear my last words ) one of them approached me.

And said shyly "miss we was wondering if you would take a picture of us so we could all be in it "

As they all stood together solemnly raising their beers for a picture.

I realised that they were all VERY old and VERY sweet

How close and full of love for each other they seemed as they stood close ( but not touching as is the rule among Western men.Never touch one of your own gender if you are a man )

Anyway walking back I came upon this sign




This love filled sign for a deaf dog along with a group of old friends who wanted to be photographed together said clearly

Surely every life capable of love is very worthy indeed

Friday, June 12, 2009

Weekly Round Up W/O June 8

She generally gave herself very good advice, (though she very seldom followed it), and sometimes she scolded herself so severely as to bring tears into her eyes; and once she remembered trying to box her own ears

  • Lewis Caroll, Alice in Wonderland

That my friends ,sums up my efforts as far as pretend play and arranging play dates go.

However this weekend I have a play date planned and I also intend to rearrange the doll house ( loving Family by fisher price ) in his therapy room. I am planning to recreate some home scenes that he is familiar with. He keep throwing the babies away so I bought a little boy and have told him that the boy is R and the woman is me ( slim, white blonde version of me LOL) as a result he loves the woman and carries her everywhere ( and I somehow manage to keep finding it by sitting on it )

we are doing pretty well with Sensory Motor Play and getting the back and forth interaction cooking –courtesy the summer weather and also the back yard set up.

The trampoline has turned into the inadvertent therapy room and we are able to get a lot of circles of communication going as we jump wildly and alternate with lying in it and idly point to all the things we see.

Sunday

PT started seriously . R knows exactly what to do, has perfect control ( night trained forever ) and has NO Interest. He is a very rational person and sees NO sense in interrupting whatever important task he is engaged in to go to the bathroom. Motivation is our biggest barrier.

I hate PT ( because I see his Point of view – and I also hate asking him to do things he does not like – still can no longer push it off as he is 4 )

Monday

Swam and Jumped and Swung

Tuesday

In the day he went to Lucy's house with DH and snuggled with her in the hammock. She was so thrilled. DH was asking him to do things and he was not doing them. Lucy said "let him be , he will do it when he is ready."

According to her R was so happy with – he gave her a tight hug and a kiss. DH told me the story and then Lucy also called in the evening to boast about it. Its been said before but I will say it again – I Love Lucy – LOL

In the evening DH was off for golf and I went to get my eyebrows threaded ( kind of like waxing but much better ).

I bribed R with a lollipop –I can see the beginning of empathy as he was quite alarmed that my eyebrow was being plucked and went to protect my eyebrows with his hand . I had to pretend that threading does not hurt a bit( complete lie ) with my eyes smarting with tears at the pain . R knows me too well and was not convinced at all

After that I wrote down some options and he chose Target – so we went to Target and he said "Berz" ( numbers ) so we went to the card section where he lovingly stroked all the numbers on the birthday greeting cards ( you are 10 , you are 11 etc ) . He played in it for a while and then we went and bought a swim toys. ( he was not happy to leave the section – I had to do the stern voice )

We came back and swam and jumped till it was time to go inside

Wednesday

First day of ESY and he was very grumpy and tired as he hates to sleep early and wake up early

ESY went well he was the only kid there. His Assistant was there from ESY last summer and they both remembered each other. She squealed with joy when she saw him and he went and gallantly kissed her hand. She was delighted and love fest followed!!

In the evening - I made ( burnt) his dinners and had to throw it all and start again . We were having a lightning storm in the evening and he was very bugged with not being able to go outside. So we finally went after all the lightning was over and we jumped for a while though he continued to be teary and grumpy

Thursday

We went out to answer an ad from a lady who was selling some wicker furniture.( we were looking for patio furniture and hers was for inside the house ) She had a very clean house ( completely beige – like everything was different shades of beige ) R and me in our brown skins and bright red clothes looked a picture in contrast LOL . R ran to her bedroom before I could stop him and was lolling on her beige cushions like a Sultan. I apologised profusely but he had won many brownie points from miss Eileen by shaking her hand solemnly when he met her so she said she did not mind at all

He did not want to go home ( cried when he saw we were turning in our neighborhood ) and so I asked him if he wanted to go to the store. And he said yes- But wanted to sit on my hip ( not in the shopping cart) and also stroke my hair ( sweet of him but his sticky hands and the potential danger of his gum chewing mouth in close proximity to my hair makes it a nerve wracking ordeal for me )

We came back and did a long Floortime session in the trampoline. Lots of pausing for cues from him. Waiting for him to take the lead – Waiting for words

I will update this after the weekend
Friday
R had musical gymnastcis and came home by 6 - we went outside after dinner and played around
Saturday
I was a little busy as one of my friends was coming over for brunch and R had a complete meltdown - I really should have had a written schedule as his therapist were off too
He calmed down after we jumped around a litte in the trampoline - As soon as my friend arrived he was totally calm - especially after she gave him a packet of Dum Dums
After my friend left - we jumped swam swung and then he was all better
Then I cooked while he ate his snack
And we went to the park in the evening as he was perishing to Fite ( fly kite ) but once we went there he wanted nothing to do with the kite but instead wanted to sit on tp of the slides and look at the ground through the holes.
In the eveing i heard him answer all tehe questions correnctly on his Math desk - question s like if you have 19 and take away two what number do you have and R pressed correctly 17 etc etc
He will NEVER do stuff infront of me

All in all a so so week.
 

Tuesday, June 9, 2009

Folie A Deux or Getting Real

Folie a Deux - A condition in which the same delusional beliefs or ideas, occur simultaneously in two individuals who share a close relationship or association

Last night R is sitting on my hip after his bath , with furrowed brow, carefully considering his fairly elaborate wardrobe – wondering what to wear.

A few weeks ago I would bring him out 2 options as he sat on his pack n play . And he would point to what he wanted

But now this won't do anymore

He is very particular about his sartorial style and must consider ALL his options.

He finally picks a green shirt – with the picture of a cartoon snake on it and the word "CHARMER"

He runs his finger along the word.

"It says Charmer" I coo "It means you are so amazing that everyone around you is crazy about you"

( R smiles in a nonchalant way. He is used to effusive praise)

And crazy we are

I often find myself running to stand at the head of the stairs – sitting on the top stair – regaling DH who sits below on his Lazy boy – with some stunningly clever ( actually rudimentary ) thing that R did or said

DH – pretending to be matter of fact – but I see him visibly swell in pride will say "Ya ya he knows everything "

Evidently, entering the world of special needs has freed us from the laws of good manners that force parents of normal kids to either not boast about their kids – or atleast try to be subtle

We are free of these restraints and boast unashamedly to our friends

"He is a genius " DH is saying to his friend on the phone, shaking his head marveling " his favorite toy right now Is the globe – he can point out many of the countries"( courtesy Happy Monster Band )

If you hear us talk – you would never realize that R has ALL the deficits of autism( language + Social + stereotyped interest ) – and more( Apraxia )

In our eyes however he has many many strengths and is a gift for the world

DH and I suffer from or enjoy ( depending on which way you look at it ) this condition - Folie A Deux.

( I saw this term on TV recently on a crime show and can see how it – the term, not the situation -applies to us )

There are so many people in the media who urge us to get real about Autism .

To give up hope

To face the fact that our child may never be fully independent

Though I see the benefits of this in terms of planning for the future and getting the right kinds of support

I would argue that in everyday life this thinking is toxic

What is the big deal about Getting real or Facing the facts ?

Why does reality always have to do with accepting an unpleasant expectation ?

As though we are preventing disappointment by lowering expectations

Disability is not necessarily a barrier to happiness

Just as Normalcy is no guarantee of it

In fact the most indisputable fact and the starkest, most true reality is this.

All we have for sure, is this moment

The one that we are in right now.

And all we can hope for, is to live this moment with joy

 

Saturday, June 6, 2009

Wednesday, June 3, 2009

Sybarite Summer or the importance of Sensory Play

My father and I email nearly every day – These past few months his emails will invariably have a sentence about the weather and how hot it is.

"It was so cloudy in the morning .. we thought for sure it will rain but it did not "

or

"It rained a lot today it was so cool in the night that we did not need air-conditioner"

During the monsoon

"The well is only 3 feet deep now " ( indicator of a good monsoon on which India depends heavily)

This pre-occupation with Summer and monsoon is very easy to understand when you see just how hot the Indian summer is and how critical the monsoon is.

There is no way to stop thinking about it!

The point I am making is that for a child with sensory needs – asking them to ignore those needs and focus in discrete trial or indeed any other therapy would be like asking someone in India in June to not think about how hot it is

It makes no sense.

You can help them focus a lot better and make them happier by simply turning on the air conditioning !

One of the best advice I got from a Floortime consultant two years ago ( though I did not recognize it at that time ) was

Forget everything – just fill up his day with Sing+ Swim +Swing

We did do a lot of that but nowadays I am even more intentional about it

So now our backyard looks like this


 

And our evening schedule looks like this ( its so great to use R's ability to read - Making a schedule and then checking things off really helps ground him and make him feel secure. It also tells him that after the work stuff ( work with Erin ) play time is coming up )


 

Another important thing to remember is that while Sensory Motor play is fun and also satisfies sensory needs based on the child's individual profile – its very important to engage in back and forth interaction while doing Sensory Motor play

So basically

Step 1 Figure out what your child's sensory profile is by observing what they like to do with they are free – do they like to snuggle within the sheets a lot ?

Step 2 - Figure out the activities that can help satisfy that need – so if you child likes to sniggle within sheets a lot - that would tell you that the child craves Proprioceptive input and therefore games like "Pillow Sandwich " ( which is exactly what it sounds like – your child is between the pillows and getting squished ) are great

Step 3 – Satisfy that sensory need – but be part of that interaction – and help the child climb the development ladder through that interaction – use your affect love and emotion and engage in as much back and forth as you can . This is one of the most important things I learned at the ICDL conference from Rosemary White's Session – ie stop thinking of a sensory need in isolation – example my son craves vestibular input so I must get someone to swing him for 30 minutes. Instead find a way to see if your child can choose the activity ( PECS board ) . Giggle Laugh , Sing songs while swinging – Enagage in back and forth interaction. Push the swing and then stop – Wait till the child asks for more etc etc
 

Tuesday, June 2, 2009

Indispensable

My mum says she gets ill a lot now that my sister and I have left the house.

When we lived at home we were so much work -that she never had the time to get sick.

My friend at work, who was looking forward all last week to her DH and kids going off on vacation, so she would have more time to herself has come in to work with red red eyes
"I could not sleep a wink. I am missing them so much K. The house is so quiet. I never knew how silent it could get" she tells me

This feeling of being needed - both burdensome and addictive all at once seems such a core part of being a mum.

Of course being the mom of a special needs child adds an extra turn to the dial of each feeling.
( Doesn't it seem that way with everything in Autism land -
Each emotion is the same - but what is different is this - everything is dialed up several notches)

I am thinking of this as I am breaking up chips into small pieces for R for his pre-therapy snack

He wont eat them if they are not in small bits.

In the same way he wont eat any vegetables unless they are pureed.

In the way he cannot sleep unless some part of me or DH is touching him all the time

I am making his drink - water with ice and just a splash of Sprite - because without that little carbonation he will not drink anything at all
( the rules of -if they are hungry enough or thirsty enough they will eat and drink just don't apply to our autie kids)

I am making a mental note to give him that 10 minute warning before his therapy starts so he knows its coming.


Parents of typical children may wonder how we love our children so much -
They may appear unlovely to normal eyes

But us mums and dads know, that if anything, perhaps we feel even more for our special needs kiddos than we feel for our normal children

For to these children we are the indispensable life line

That crucial part- without which the entire machinery of therapies and school will come to a halt

The reason for every skill learned and the reason for a necessary skill not being present( no wonder we carry so much guilt around)

The real twist that can add an edge in our love is that in helping our children with special needs lead happy lives - only we know ( and care ) exactly what they need

I ponder upon how indispensable us mums and dads of special needs children are

I hope we live long
I hope we all live healthy

Floortime Lite Mama

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