W/O May 17 Bits and Pieces

I have not had any time to write these past few days  so here are just some bits and pieces

School and Summer plans

School Is over .

We have a program on for summer with Speech , ABA and some pretend play and hopefully OT - but not too much -

Also I find that in the Summer due to people taking vacations and such the schedule gets even slacker than normal

R is on a bit of a plateau - but like his therapist reminded me he always flatlines a little bit before having another developmental leap so I am trying to be patient

Example he will write things on the side of a bathtub ( here he has written 5 little monkeys )  but wont play word games with me

His gran who loves him to bits asked me the other day about  how much autism R has ?


Her close friend has 3 grand kids ( all girls - all with autism )

She had spoken to her on the phone recently - they are now 11 and 13 and 2 of them no longer test on the spectrum

I suppose she thinks R will be the same ( and he may of course )
But I answered honestly that R has a lot of autism - of course he also has many many strengths which will serve him very well
 
I think a lot of the Autism game is set up with two options in mind as success criteria  -
 
One is recovery ,
 
Second other is internalizing a belief that Autism in itself is a good thing
 
DH and I are now in the stage when we simply dont think in those terms anymore
 
Its  all about having a happy and contended present(  and I would argue that we have a very fortunate life- full of love and gratitude). And about making sure that R has the best shot at a happy and independent future.
 
Still we are in a very different part of our Autism Journey  than R's extended family
 
Work
 
Is simply mad these days .. gone are the days where I had time to take for lunch.
 
I am only getting this time to blog ( after a long day of a work trip  ) as I am in a hotel ( missing DH and R quite dreadully as the last time I had stayed at this W - they were here with me )
 
I am not complaining about work though -
 
I love research - 80% of the job is back-breaking hard work but the 20% makes it all worthwhile -
 
I love psychology -
 
I often wonder at all the dramas that play out in people's homes. 
 
Sometimes when I have my researcher hat on - neighbourhoods look like dollhouses
 
If I could lift the roof of each house - what story would it contain?
 
If ghosts exist - do they enjoy being able to see these stories or do they wander about wraith like disinterested 
 
Do you wonder?
 
 
Trip To Athens, GA
 
We take a weekend trip to Athens GA - where both DH and I have graduated from ( many years ago )
We wander around campus taking pictures
R sits by the fountain and has a great time
 

 
At the end of the day after I have put R to bed - MIL stays with him and DH and I go out for  dinner
 
There sitting on  chairs on a restaurant that has  pavement seating in downtown over wine and tapas - I feel all my weariness slipping away
 

These   couple of hour is literally the best bits I have had in a long time
 
Bad picture but its with UGA so I had to put it up !
 
when we get back MIL tells us that R has been  waking up every 30 minutes whining and I snuggle him and go to sleep with him
 
IKEA
 
Here is one ambitious plan for the summer
 
R is to sleep by himself !!!!
 
We have bought a bed - wish us luck !!!( picture from IKEA store - we will obviously have a more R-preferred theme )
 

 
 

SOOC Saturday :The beautiful people

On the day you find out that your child has special needs

Its like you have been forever banished from the land of the beautiful people

( “Beautiful people “ is a term coined by my friend D – these are people with “Normal "lives - those with the 2 kids who excel in school and soccer, the picket fence, the SUV,  the doting husband )

The day that you find out , cleaves you from the rest of the world, as sure as if a line had been drawn and a giant hand picked you up and  put you on the outside of that line

Now there is a them

And there is a us

We cope in the ways we cope

We reincarnate several times

Warrior mum

Therapist mom

Pioneer mom

Team Manager Mom

Sad mom

Guilty Mom

Scared Mom

Some time we are all of these moms ( or dads)

But all the time, we are on our own periphery, separate from them

The inner circle of the beautiful moms

Seemingly without a care. ( though I know beautiful people- and they all have many cares- just different ones)

And we wonder at how one word could be so big

That, with that one thing added to your identity – mother to a special needs child - you would be different forever

But then at some point in our journey, if you are lucky you start to look at our life with our own eyes.

You see the beauty of the child you do have

The force of the love your child has for you  frees you to see the loveliness of your life

If you are luckier still - you get the eyes of wonder

The eyes that look for each little step and celebrate it and take nothing for granted

And then,  one day, if you are the luckiest you stop

See yourself in the mirror

Catch your life reflected back at you

Realize with surprise

That you are the beautiful people

“We are perishing for a lack of wonder………………… not for a lack of wonders”

GK Chesterton

Melody asks us to share the love this weekend at Slurping Life. Please do join her to meet her and other wonderful bloggers who share a slice of their lives

Finding meaning behind Autistic rituals

Its 10 years ago

I am leaving for my Masters Degree at the University .

I am homesick and forlorn – even before I have left -for I will not see DH for the next few months

“And when you first get to the University – quickly arrange some things around you that remind you of home – like some pictures” advises a friend.

He knows of such things- as got his MBA from Singapore.

He knows how lonely and disorienting a new place can feel at first

“Arrange it the same way it was at home” he advises “ it will make you feel better

Its true

Familiar things are like a scaffolding for our identity

( I feel such a pang for homeless people sometimes for it must be terrible to have nothing to ground you )


There is such safety in sameness.

I have always known this

Therefore it feels paradoxical, to perceive such strangeness, in autistic rituals

“ He is just so odd the way he must do 3 things in the same order before we leave the house ” we say

“ He is having a really autistic day today … lining things up all in order”

We will describe the day we knew for sure that our child had autism – a sinking feeling when we saw our child had lined up all the shoes according to size and color

We will lament at their “obsession" with alphabets and numbers

After a while, DH and I, realized that R's passion for numbers and letters was no odder than any neurotypical child’s carrying around a security blanket. Or indeed my desire to ground myself with when new at the University with some objects from home

Now that I observe – really observe – what R does - with a firm belief that it has meaning  – instead of dismissing it as purposeless stimming – I find his stereotypies  give me  unique insight into his thoughts

For instance tonight he wrote on the side of his bathtub ( "we made it" ) which DH observed was a carryover from the "Little Einsteins" show he had been watching where the characters are in Antarctica rescuing a Totem Pole.
DH says he has been watching this show in all his alloted TV time today

This morning I observed him on the computer playing games with Penguins

Later I found that he wants to ice skate on the wii

Then of course when It came time for bed – and he had to choose a book to read with his Dad – I knew even before he said it that he would choose the book “ice is nice “ by Diego

Therefore its clear that, R is currently interested in Snow and ice and is choosing every way  he has to learn about this

By believing that his actions have meaning for him - instead of dismissing them as perseverations - I get to know him

In fact - perseveration can be used as a motivational tool to teach.

For instance, tomorrow I will show him how to turn water into ice, do ice games on the Wii with MingMing ,  dress up our dollies and do some pretend play with snow and cold etc

Truly while Autistic people may seem very different than us –(  in some cases we may feel like they are from another planet ) but the reasons for their behavior are the same as for any of us.

When we  feel that we lack control,  ( for surely a world that speaks in a different language that us must make auties feel perplexed and out of control all the time )-  we seek order -we seek sameness

We shake our head sadly when we are asked if our child plays with a toy “appropriately” or if he just lines them up
( Now I feel I should have answered - "but really he is playing with them appropriately.. change the question please - ask if he is playing like a neurotypical child or not?" )

Or when we sigh at his needing to take the same route to the grocery store each time

Its really no different than me needing to check if I have my ID a hundred timeswhile driving to the airport

The behavior may look strange but we truly are more alike than different!

This is only one of the many things I learned from Dr Stanley Greenspan

W/0 April 27th – the week I missed

I was out of the home most of this week .

One of my colleagues – himself a devoted dad – says its like he missed a whole week of his kids

It is so very true especially in the way I travel

I compartmentalize to the nth degree – this is sort of easy because R does not like to talk on the phone and DH is too busy with building a garden shed to talk !

Random things disturb my equilibrium from time to time -
Dandelions on the road side, a neat row of Sprite at the focus group facility that I know would make R swoon with delight, someone ordering a pork chop- this one makes me miss DH quite terribly for the man loves his pork

( Work, chores and Floortime -do not allow for much only-us time between me and DH – except for our precious lunch dates- and now I miss him at all restaurant meals - when someone orders the things DH loves - disgusting-sounding things like pork-belly fat or when I cannot make DH order desert so I can eat it )

Its strange to think that when I travel- R and DH’s lives go on without anything of me

My character in our story re-enters in a subsequent chapter – having had nothing to do with the prior chapter!!!

This sounds forlorn

But it isn’t – if there is joy in indispensability( how much we love to be needed!) – there is great freedom in knowing that life goes on without me

I wonder if my mum and dad feel this way about me and my sister

Here are some random things we did these past 10 days

Kites

The weekend before I left we flew kites – this was a lot of fun .

My mustachioed DH flying a ladybug kite is a darling sight to see and R had a lot of fun( in the way R has a lot of fun )

He enjoys them slowly – seeming to ignore them when they are actually happening

And only being able to involve himself in it after its over

White board writing

Here I wrote down for R – that he had two options

1. Come with mom to Kohls

2. Stay home with Papa

As you can see R chose a third option

Not only is this an example of flexible response ( Person A responds to Person B based on what Person B said ) – far superior to choosing between two alternatives

Its also an example that R has chosen to respond using the same method I used – a written question begets a written answer

When we are at Kohls – he wants to go home and whines and tries to herd all of us together.

Funnily whenever he is stressed out – his pronunciation changes .

As a child who learned to speak through hyperlexia -under stress- he pronounces Home as Homey ( because that is what it reads like )

Conversation

Scene - me intruding on to his TV show and R wants to be by himself as we have played together too much

Me : Shall we sing Up Down with Rocket

R : “Stand up.. walk” ( how interesting that he describes the physical actions I should take – rather than the more neurotypical statement –“ go away”)

Me : Pretend Crying – “Mama sad… “

R instructs : “Mama Happy” ( gives me sideways hug ..waits till I stop fake-crying and then )….Walk

When I am gone

I find one more way in which R uses his “Shee with Mother “. This time as a threat. After a scolding from his dad – he threatens his dad with “Sheep with Dadi “ ( granma )

Dr Stanley Greenspan dies at only 68 – I am devastated – he was truly the greatest mind in my opinion in Autism

When DH is hunting for the remote and asks R – R takes him to the rain water-harvesting tanker that Dh has created where R has dropped it –
DH is so entranced at how R remembered and confessed even though he knows it was a bad thing to do – that R gets only a fake scolding

The weekend after I return we buy a bike

I get Barbara’s book – how to cook with "mommy and me" – and inspired -I make pizza with R

We play and cook most of the weekend

SOOC Saturday : Returning Home

Last night I return after the week on the road

R looks at me stunned ( I have asked DH to  not write me in on R's schedule - in case I am delayed )

He then tries to pick up the threads where we left them

Makes me sing all of our  songs

Yellow Submarine
Hello Goodbye
Rudolph
Deck the halls etc

Slowly trying to take in that I am really there

I used to wonder earlier why he rushed up to me joyfully every evening after work -lifting his arms to be picked up, covering my face with kisses

But needed to somehow adjust when I return after a work trip

I used to wonder if he somehow had become used to being without me and that he had not missed me

But nowI know that the fact that he needs this sort of  buffer zone before he fully connects -  means the opposite

It means  he had missed me too much

 I ask him "Shee with  Mother " ( mommy do bedtime )

He answers solemnly - "Ess" ( yes )

As I  do our familiar bedtime routine - which now incorporates Pablo and Diego - he suddenly looks at me sadly - his face crumples - and the tears start

I hold him close and tell him that though I travel - I take him with me everywhere in my heart

And I do

As he finally drifts off into a deep sleep ( sleeping for the next 12 hours ) I look at his slight sleeping form  in the half light and thank god for the giving me this  enchanting child

Melody asks us to share a truth that we feel in our heart today

And the truth - is that I feel there never was a mother more loved

For more fun with SOOC Saturday and to meet some wonderful bloggers and meet my lovely friend Melody go here

Childhood expressions: Blog Carnival

R has always been one of those children who loves phyical touch

I suspect there is a sensory basis to this

I think he could not feel his own skin unless it is touching someone else (imagine the insecurity this could cause-this deficiency of proprioceptive sense- like being  suspended in space )

It may have served a fundamental sensory basis with a need for security as an infant

But even as this has resolved somewhat  - he loves touch

R is still at the stage where the spotlight of his love shines in a small  tight circle -and I am the lucky one right in the middle of that circle

With his love for mom and love of touch it was no surprise that one of his first phrases was

  "Shee Ma" ( Sleep with Mother - that I should do bedtime)

He would bargain for it from an early stage

Never more content, than on the crook of my shoulder drifting off to sleep.

As he turns into a master manipulator at the age of 5 - he has suddenly started using an offer of his bedtime ritual  as a reward

His doting gran and aunt are here and when they do something that pleases him ( like give him the remote control of the big TV ) he offers majestically

"Sheep with Dadi" ( sleep with granma ) 

( He never follows through with this promise though, ending the day with wails of "Shee with mother "" Shee with mother" - worried that he will be held to his promise made earlier in the day )

On  our side , we use this phrase as a threat

"Eat your dinner or NO Sheep with Mother "  I threaten( as he pretends to gags on the veggies -  it works like a charm )

We use the phrase to make conversation

Instead of  the question

"Do you love your father more or mother?"

we ask

"Do you want to Shee with Mother or Shee with Father "

As R adds to his vocabulary, I am noticing that we too, use the phrases he does - complete with his curious Apraxic lilt

Words that  are now becoming a part of the story of the three of us

So phrases like

"Get off "( to remove anything )
"I/knee/eye/hair hurt"( to express discomfort with any part -physical or emotional)
Jup( jump )
Byce( Ride a bike )
The odd "First " Then " way of speaking ( "First we play with the doll, then we can play on the computer ")
The ubiquitous "All done"

And so on

But as the process of raising this child is irrevocably transforming us - I find that for the first time - I think about the purpose of language in a deeper way

Though it seems obvious that the purpose of language is to communicate our thoughts and feelings - I notice how we - the vast population of  the neurotypical  - use words  not to express but to influence a desired outcome

These days, I find, I have little patience with the word games

I slowly find that I am stopping using my words to manipulate others  or to protect myself ( what is sarcasm - if not a shield or a weapon in human interaction- interactions  which can sometimes resemble a battleground? )

I try to say what I really mean ( while still being kind )

How freeing it is!

Indeed I dont miss the irony that my child of few words has taught me how to really  talk

So if for instance, I  am upset with DH , instead of using all the weapons that words give us - withholding words ( the dreadful silent treatment)  or wounding with  sarcasm or sharpness or dredging up past hurts - all the ways in which we grown ups learn to use words as weapons and shields

I simply use the words that R has taught me

I say "I hurt"

PS this post has been written for my friend Barbara's blog carnival  here. She will publish her carnival on Childhood expressions on April 25th

Week of April 17- in which we have an IEP

Saturday

R has been kind of lackadaisical lately

This is the difference between R’s highs and lows

In his highs- there is a real gleam in his eyes and his interactions are very plastic – there will be new styles of interactions and new patterns

He seeks me out a lot to play

His lows are defined by a sort of repetitiveness in the interaction, less flexibility

He seeks control a lot more and is happy to go from screen to screen

He will tell me to sing a song – then ask me to stop mid way and then ask me to switch to another

It reminds me of the way he loves to have a the remote of the TV in his hand - so he can rewind over his favorite bits and forward over the boring bits

Its all about control really

But the real question is why he seeks control

He is not doing badly or regressing or anything like that , example I overhear him in the morning with E she is getting him to describe all his toys and he does in the following fashion - here is an example of how he describes Austin- a Backyardigan

This is new - every time I see evidence of original thought –and on top of that a verbal expression of that original thought - I rejoice

In these times of lows , I really don’t know what is the right course of action –

Should I step it up or should I lay back ?

I usually simply do what feels right

II decide to take it easy today and don’t pressure myself to do any planned Floortime at all –

And its good for me and as he has had two ABA sessions I don’t kick myself too much

In the night however – he is very distressed that he has had no time with me at all – and wails and demands to jump etc

He keeps insisting that I sing a song in the bathtub – I cannot make out what he wants me to sing

I take him to the computer and he types out pompously – I R____ ( his name ) and then he dissolves in tears and will type no more

DH and MIL reupholster the dining room chair and they look magnificent

Sunday

Again R demands screen after screen in the morning and I let him as we will spend the day in the mountains

We go to our ( almost our ) cabin in the mountains – and have a picnic of homemade chicken Salad sandwiches ( this is one thing I am really proud of my own recipe - marinate chicken in yogurt and ginger, garlic coriander and cumin – cook the next morning – shred with chopped mint+ cranberries and pecans – and use between bread )

Really its soo peaceful and calm – you cannot hear a thing!

R lolls around the wrap around porch with Pablo – I have won major brownie points by showing how to make a butterfly with Pablo’s hands

He makes me do the tune for V for Violin ( from the Sesame street Keyboard-arama) over and over and over

He was playing with the Beanie Babies and identified Ruby as having “Wikers” ( whiskers)

SO I quickly build on that theme and identify the others who have wikers – Swiper and Babay Jaguar

I insist we go out and suggest we take the people with whiskers out to jump

But R – says “Kagoos jump” ( kangaroos jump ) and so we take Austin out ( my heart bursts with pride )

We jump slide and play and have a great time !

R explores everything outside with such interest and so much appropriateness that I am simply thrilled

Monday

Another very good evening

We are building on pretend play and language quite well ( BTW please don’t think that this means he is becoming NT or anything like that – just that language is building in a very natural normal fashion - even though he is VERY VERY behind)

In the evening I rush through the routine though R is claiming as its allergy season that his eyes “skatch” and” itch”( scratch and itch )

After I finish bedtime and go back to the bathroom this is what R has written on the side of the bathtub

I guess R’s eyes were really hurting

Tuesday

Very busy day – DH drops me to the sirport at 6 am and I spend the whole day in Cincinnati having very interesting day in research and return home late in the night – DH picks me up at 10 in the night

I am dead tired but R wakes up several times in the night coughing

At one point he wakes up coughing yet again and I say his name in a groan

To my utter mortification – R says remorsefully “Sorry muther”

And I feel like a evil heel and apologise humbly

Wednesday

We have his IEP meeting at school today

His teachers and school are very sweet – his speechie class teacher etc gush about how wonderful he is and itemize all his amazing traits ( from his cleverness and hugs to the amazing length of his eyelashes ) and how much they love having him in school

I adore his teacher – she is seriously awesome – I feel like she really cares about R

They say he does not qualify for ESY and we are okay about that and frankly are glad that some other child will be able to benefit from this service

Not a big fan of the OT whose only comment is that we should reduce his OT services – this we strongly request not happen –

I wish we had a different OT – so I am not sure whether begging for his OT to stay at the same level was any use or not

We are successfully able to argue for some mainstreaming and some pullout in a small classroom instruction instead of full mainstreaming

DH and I are very nervous about him being lost in a large class and we talk about how important that fact that he goes to school with a smile on his face is

His self esteem staying high is a critical goal

His teacher is very nice and says we have done a miracle with him and talk about how much he has progressed over the past year and how lucky he is to have us as parents

I tell her that the luck is all ours and we won the lottery when we became his mum and dad

And it’s the truth

I cannot bear to leave school without meeting R but R is stunned – his worlds are colliding and he kisses me with tears rolling down his cheeks when I say bye

At home we do Wii Sports and play with all his toys

Though all he wants is electronics - when bedtime comes around he throws a first class tantrum and demands to Jump
Alternating with pleading , demanding and saying he is soo sorry

Of course since he has thrown a tantrum i cannot encourage it and sternly put him to bed - he looks so cute while manipulating me that I have a hard time not kissing him

I dont want him going to bed thinking I am angry though so kiss the top of his head as he drifts off to sleep in the crook of my shoulder and tell him that I love being his mother
And I do

SOOC Saturday : Slowing down

A walking to-do list,  I am , these days

Always rushing to get more done faster

I glance at my watch frequently,

Relieved that I have a little bit ahead or

Panicked that I am behind

I set timers

All my appointments on Outlook  at work ping their warnings on cue.

I even have a timer set( on my phone)  to write this post

And so my days go by

To that persistent rhythm of time

I think of time... all the time

Tick tock

Tick tock

But then there is my child

Who makes me pause

Creates these oasis in my days ..

Where we do what we want to do

One of the best things that a Floortime Lifestyle has done for us really- is that it has legitimized  "chasing butterflies" as my friend Tanya calls it

The other day we went outside into the gorgeous Spring day and did songs  with things from nature

Somehow the time felt slower, more gracious , more leisurely

Here is a picture of him singing 5-6 pick up sticks

With him , I reset the tick tock background music into a  differerent song

Reser it to an old favorite

Got no deeds to do,
No promises to keep.
I’m dappled and drowsy and ready to sleep.
Let the morning time drop all its petals on me.
Life, I love you,
All is groovy.

Simon and Garfunkel, The 59th Street Bridge Song (Feelin’ Groovy

Melody asks us to share an image thisweek -

And this week's image is the peace and realness that is R

For more fun with SOOC Saturday and to see a lot of lovely blog participants go here

The w/o April 13th : In which I realise once again that the R is the human Prozac

Monday

Uber stressful day at work

When I come home - I am forced to put the day away - as  R tugs at my hand insistently demanding - Wii Sports -

Somehow I am able to switch the day off and simply be in the moment with R.

I used to think compartmentalizing was impossible - but now I realise its the best way to function

We jump swing and have a great time

I am reading before bed "Raising a Sensory Smart child " which my online friend at therextras recommended

 Its very interesing -

"Sensory Modulation" problems describe R to perfectly and I believe is the cause of  of most of his Autsim I think

 All development ( NT AND Autie ) is the result the way in which the sensory system of the individual interacts with their environment . Think about the experiment in the way baby birds become blind if kept in the dark


In an article that therextras sends me and my fellow blogger Joy mama - the author  says

"We believe that the visual and auditory cortical thickness increases may be related to enhanced visual and auditory perception in autism" -

What if this was at the heart of the sleep problems that many Auties have -

Autie parents often say that their kids cannot sleep because "they cannot shut their brains down "

What if they cannot shut their brains down because they are hearing too much ?

DH and I often say that good sleep is the best biomedical intervention for R!

I recently read that the brain's neuroplasticity is affected by sleep

I am also reading Careless in red - by Elizabeth george ( psychological thriller  based in London)

I am such an anglophile - which is interesting  -considering I grew up in India where a lot of our school books dealt with how terrible the Colonial Era( British Rule in Indai )  was for Indians

Still a country like India is so old that the 200 years of British rule are a relatively small blip and even though there is much drama in the stories - there is also a general sense of shrugged shoulders from the people

The other book I am listening in the kitchen to "Poirot Investigates"Short stories by Agatha Christie

Does everyone read multiple books at the same time ?

I do and I end up finishing all of them - Just finished "Lost Symbol" ( Robert Langdon of the DaVinci Code Fame - not worth reading )

Tuesday

Another tiring day -

Nowadays I feel everyone I meet has a I-expect-something-that-you-did-not-give

I think the reason I am so tired at work is that I am not getting much sleep and I think that adds an edge to everything

I am listening( on my car's CD player)  to a story called "The Horse Boy" -

 its about a Dad who has a severely Autistic child  -

The child's name sounds exactly like R's( the two R's have a completely different sensory profile though )  and I startle every time I hear his name- really enjoying it -

Unusual and wonderful Dad and Mum with a good sense of humor

He senses a connection between his son and horses - his child is extremely hyper except when on a horse

Horses also obey this child

Its not the usual formula of Autistic Child + Dedicated Mother + 40 hours ABA = Recovered Child+ bestselling story

Anyway the Dad living  in Austin Texas - goes off to Mongolia - land of horses and Shamans - to seek Shamanic healing.

The Shamans tell the mom that black energy entered her womb when she was pregnant

Some of the ceremenies make me laugh out loud as the involve the mum and dad being whipped by the Shamans and they ask mum to go and wash out her C-section scar with milk

I will let you know how it ends -

I always find it very interesting to read these differnt perspectives on the road that parents take - there is so much to be learned from each story


a wide spectrum of mix of Autism stories from parents  is as follows

1. Son Rise ( Raun Kauffman's story - how his parents invented the Son rise program and completely recovered their severely autistic son )
2. Let me hear your voice ( Catherine Maurice and the way she recovers her kids through ABA )
3. The Boy who loved Windows ( wonderful story about a mom who uses Floortime-  )
4. Gift from my son : Autism Redefined  ( really nice book about a mom who comes up with a new theory of left-right brain dominance and also finds her son to have many gifts from his Autism )
5. Child of Ethernity ( mother who finds her daughter to be a messiah - interesting read but a little hard to swallow )
6. Unraveling the mystery of Autism and other Pervasive Development Disorders by Karyn Seroussi ( who uses DAN and the Gluten Free diet )
7. Horse Boy - Shamanic Healing
8. The Mind Tree - written by Tito Mukherjee  - his mum's very unique method called "Rapid Prompting"

The warrior mom archetype is talked about a lot in the autism world

But what I personally see is the pioneer archetype  - as the spectrum is sooo wide that each child is still unchartered territory - our kiddos all respond to things differently and we all need to find our own way


Once again - as soon as I get home R wants to play and once again the worries of the day are gone .

DH is off to play Golf and MIL has cleaned and cooked dinner so I do not have much work to do

E comes to do her therapy session .

I think she is sad these days -

R holds her face in his hands and kisses her cheeks gently.

I sense some of her stress slipping away - ( like mine did earlier this evening )

Really there is something  so comforting in the gentle ways of this child -

How this puny little child centers me I cannot explain - but he does

 I thank God for him everyday

We watch How I met your mother and Big Bang Theory ( both losing their edge but still funny ) and now I am off to sleep

Tomorrow I get no time at home as we are to do a team building exercise at work  rambling around the country side in the hot sun  looking for clues

W/O April 8th: in which we play the part of languid invalids with a martyred air

 All the days of this week has run together but I do want to record it so I remember

The weather is TEXTBOOK gorgeous

 

Sunny Skies day after day!

 

The South is in its full glory with the trees heavy with peach blossom and dogwood

 

But my home is full of mailaise and discontent

 

DH and I are sick

 

I clean to soothe myself - as it gives me a sense of control - organise all of  R's books by size and age range

-( any wonder why Autistic people feel soothed by lining things up? )

 

 

We are not at our best when sick.

 

Our conversation  detereiorates

 

"This part of my head feels extra heavy now "

"I could not sleep at all last night"

"The Antibiotics are making my tummy hurt

"Ugggggh I am so tired "

 

Other random things break

1. Our bed
2. R's glasses break -both of his glasses - as he has been rubbing his eyes endlessly with all the allergies
3. Our garage door

 

Does it happen to you where one anoying event follows another ?

Sometimes I wonder if there is anything to this law of attraction nonsense!

 

By mid week I decide that we are going to act better - because for me - pretending  is frequently followed by the real things

Fake it till I make it !

 

Also I realise that my focus has really shifted

 

I am focussing on everything that annoys me not the things that make me happy

 

 

Like just how gorgeous it is !

 

It really is heavenly outside and I resume taking my walks

 

DH and I try to eat out at lunch on both Tuesday and Wednesday - even though we are weak and tired

Still its better than nothing

I also change the content of what I say  - instead of sharing the horrible-ness of how I am feeling - I start speaking with the use endearments again

Instantly I start to feel better

R is really starting to answer questions  really well that are close ended

"Do you want to go  from the front of the house or the back of the house?"

he will answer "Front of the house "

Really he learns language like an older person learning a foreign language .. but he is learning it !

One interesting thing I am noticing is that while he is always very polite - he really does try to always get his own way

His interest is in not getting caught

One crime is that he likes to sit on the computer table

Every time I see him committing this diabolical crime - I squeal in horror

R looks at me contritely

He says "Ooops ... sorry" ( I have to work really hard to not smile as its ADORABLE )

But then as soon as I walk away

There he is on the computer table again !

This is lovely

My MIL and SIL arrive for a visit

 R is excited to see family come to visit - this is such a change

The last time they came , he become extra stimmy and appeared stressed

They fawn over him and he fawns over them - this is fabulous because him Grandma and Aunt dote on him

My MIL is a workaholic - though I picked up and cleaned before they came - she immediately gets a broom and a pan and starts to scrub and dust

The house is sparkling

We go to his new Kindergarten Classroom - he will start in August

They have no special ed classes any more - so everyone is mainstreamed

The classroom size is alarming - the current classroom is 22 - I worry that R will simply be lost

I take some pics of the essays that are depicted outside - the outgoing class has proudly displayed these

R must know this by the end of the year

We want to make sure - we support the academics so he can focus on the Social - as Danette and her DH advised in their blog once

Work has been uber stressful and I am suffering from insomania again

My goal for the next week is to focus on the important stuff - get some sleep , be more productive ( especially in terms of floortime )  and worry less

“It’s not the work which kills people, it’s the worry. It’s not the revolution that destroys machinery it’s the friction.”

~Henry Ward Beecher

'

What I wish I had known about Autism right after diagnosis

Writing this post as April 2 is Autism awareness day –



Thanks to some of my online friends who have given me some of the advice – If you have any advice – please comment and I will add on to this post and make this post more robust and provide it as a link on the sidebar
Hopefully some parent with a newly diagnosed child will find this helpful


These are largely the opinions of me formed through my own experience , discussion with my DH, professionals and my online friends


Will my child ever talk ?


I  believe most children will talk . The small percentage who don’t - will also - given sufficient time and resources will be able to communicate meaningfully

Do not think of talking as the answer to all your problems though – My friends L says – “when your child with autism talks . he will be a child with Autism who talks”

Another friend K adds “So many parents, including me, hold talking as a holy grail, when in reality it's just another form of communication with an autistic child”

In Autism the entire game is about communication

Embrace PECS, Sign language, written language ( if your child is hyperlexic ), augmentative device – whatever to communicate

Some people gave us some very bad advice that using PECS etc would slow down language –

 Luckily other people and professionals helped out and we started using PECS ( now no longer really need them )

All these tools will help with the talking


Are children with ASD mentally handicapped or will they be Savants?

I think that many ( not all ) autistic children who are diagnosed with MR do so because of their problems with language.
They may not understand the questions being asked of them , they may not have the motivation to answer these questions and they may be distracted by their sensory reaction to the environment

Then there are problems with Processing Speed

And my personal opinion is that there is a lot of fear and anxiety in autistic children and this significantly slows things down. ( Temple Grandin says that the primary emotion in Autism is “fear”)

In terms of Savant skills - there are the exceptional savants of course .

But one of the criteria for diagnosis which is stereotyped and restricted interest potentially could allow for unusual focus in one area.

This ability to focus may be the source of excellence

And there will be most children who are neither Savants, nor have MR – like R


Will my child be okay ?

I used to ask neurologists etc about prognosis in the early days

But I don't think anyone can really answer this question.

I think R will be okay in his own way. ie he will be a good person - and I also hope he will be independent and self sufficient.

I think he will also be able to have loving relationships ( already does )

We have done best by keeping our eye on the big picture of what is important

Normal is not a goal we necessarily strive for



What should I not waste my time on?




1. Wondering what caused Autism ?


( secretly wondering if there was anything that you did to cause it )

All mothers, as Vici Forman says in "The lovely Life" ,believe that they can prevent anything bad from happening to their child if only they pay sufficient attention - - and you can start to wonder if its  the coffee you drank while nursing , the baby einstein DVD's you pressed the replay button on etc etc )

This is simply not true and to always gauge yourself against the bar of the perfect parent you should have been will drain away your joy



2. Wonder whether Autism a good thing or a bad thing?


It does not matter.

Example a lot of times I have been asked the question "would you take away R's Autism if you could"

This is the ultimate pointless question because the option is not on the table and never will be .

( Having said that if a fairy godmother granted me a wish – I would whisk away R's apraxia and his Sensory issues without missing a heartbeat. Like most parents I simply want the best odds for my child )


3. Constantly Researching the best method to help your child


Frankly all the methods have their pros and cons and its largely the quality and quantity of intervention that will make a difference.

A lot of the specialists will say that their method is the best or that you cannot combine two methods( - but I think you can in our case ABA has flowed quite well with Floortime)

While we learned and continued to learn a lot of Autism from all the specialists - there is only two people who are specialists in R -

Mum and dad !

The sort of therapy naturally appeals to you will depend a lot on your instincts.

And on your child

If you are a parent that is more a player with the child you may find Floortime /Sonrise or even Hanen or the Play Project appealing

If you are more of a parent-parent – you may want to first look at VB/ABA and RDI

Another really critical thing to look at is the resources available in your area –

Its tempting to want to do it all yourself  – but I find that the hour in the evening that R has with his therapist is critical for me to sort things out , get dinner organize etc and then I can play with him after his therapist leaves .


Do the specialists know best ?

Depends upon the expert- - We have found WONDERFUL experts and some not so wonderful ones

Leaving it all to the therapists has dangers – nobody knows your child as well as you do

My friend D says “I wish I knew that autism presented in many different flavors. That some kids did better with models/approaches other than ABA. “

M adds “With a diagnosis of autism, its as if you've been given the job of CEO, CFO and COO of your child. You are in charge of a new kind of corporation within your family. You get to choose what vendors to work with, you get to choose what money to spend on those vendors, you choose how your child's activities will be structured. However, just like the executives of a corporation, all of your decisions need to be based on the facts on the ground, what's available and what's called for, in corporate speak, those Market Trends, but more importantly, you need to base your long and short term goals on the output and productivity of your child, what he's capable of today, and how you'd like to see him in the future, with the course corrections and the reorganizations that are so typical of big businesses. If you are too static and too staid in your course, your child will become disgruntled. If you are dynamic and ahead of the curve, you and your child with thrive”


Change your mindset from Recovery to Progress

I  spend a whole lot of time looking for the magic bullet – read every “recovery” book

Went to all the experts

There are many books which describe the despair of the diagnosis – then the parent who searches out a method – Applies the method, sacrificing all,  to the recovery of their child –

 And then their child recovers

However I find there are many parents who also worked heroically whose child did not recover.

These parents are just as heroic- I know some heroes personally.

Its just that their stories are unwritten

Plus while these stories are inspiring – there is another implication which can be very damaging to your happiness.

This implication is that if your child did not recover – clearly you did not do a good enough job - this is a TERRIBLE thought to live with and is simply not true

DH and I tend to focus simply on Progress

One of my friends says that the definition of success is that you are battling a different battle this year than what you were battling last year

Very true

My good friend L’s advice is “Celebrate progress -Yes, it is progress, quit being so picky about it !!!”

Don’t think your child not doing what you wanted for them is a bad thing necessarily

Another friend Kat says “The biggest thing i have learned is that everything I held dear in my imagination about what I hoped for for my child was right only for me.

My child is not me and has a completely different life trajectory than I will.”

PACE yourself

And be kind to yourself

Guilt , grief and anger are very bad companions on this journey

A positive outlook is CRITICAL for you and for your child  and your spouse ( and your other children )

P says “Next came the I'm going to do everything I can and research all the treatments and try everything. Then after 3 years of working my ass off he'll be "fine" or "cured" just like all the books say. Ha. The only thing I accomplished is burning myself out. I still haven't recovered. When they say it's a marathon and to pace yourself, they're not kidding!”

Another dear friend E says "Don't let all the "warrior mom" stuff go to your head. Yeah, you will fight hard for your child, but lots of moms do that, not just those in the autism community. I learned how to be a fighter from my own mother, who had no special needs children."


What does my child REALLY have ? Is it Autism or something else?


Autism is a HUGE umbrella .

Don’t be scared of the word

We found that its best to simply focus on what R needs- not what he has .

This will change over time – the challenges we needed to conquer in the beginning were for R to simply have some receptive language – then we discovered apraxia

C and T say “Don't get caught up in the name - PDD, PDD-NOS, Mild, Moderate, Severe, High Functioning. It doesn't really matter. You have to look at your child and their needs and goals. The name doesn't really make a difference”
There was this story about an autistic child who grew up and beat his mum to death ? Is that my future?
While there may be some autistic children who are violent and a danger to your safety - I have never met one !

Most of the autistic children and adults I know would not hurt a fly.

Its very important to not read horror stories and imagine that to be your future.

If this is indeed in the future - worrying about it  will only drain away your present of joy - as my friend Mysh says .

If indeed this were to happen of course we will need to put safety first - but there is no necessity to anticipate this.

Another thing to remember is that aggression in toddlers and children does not equal aggression as adults


How to deal with the things people say

My friend E says “Your child's autism can be an opportunity for strangers and loved ones to be incredibly insensitive. Try to see the difference between the people who are invincibly ignorant and the people who mean well but just don't get it. The former are incorrigible but the latter can be taught. Be patient and understanding, just like you want people to be patient and understanding with your child. “
I personally have found many many wonderful people in my life because of Autism


Don’t over pathologize

Your child is still a child

My friend D says “I wish I knew from the start that he was there, that he was in there. He was present, full of emotion, and intelligent, even if he was puzzling to me.
I wish the time period immediately post-diagnosis where I stopped seeing him as a child and started seeing him as autism. …. I wish I had never done that”

A note on DAN

We do some DAN – again its not been a cure-all and we don’t know how much of a difference it made but we wanted to make sure we gave R the best shot so we went to a DAN guy who is also a regular MD

Be careful of who you choose

A gem of a quote from my friend who is a doctor herself “No, DAN! doctors are not immunologists, toxicologists, pediatricians, microbiologists bundled into one. For the most part they are family practitioners with a 2-day course who quit taking insurance. “

Is my family’s life ruined ?


It really does not have to be .

Dh and I have found ourselves happier after autism than before autism – I have a whole bunch of posts on it in the  button labeled  “Happiness “

Please don’t misunderstand . I am NOT saying Autism is a good thing to happen to you .

All I am saying is that happiness and joy are very possible in life after autism –

I have found my life more enriched in many ways after autism.

Another gem from L “-Shit happens. It could be so much worse.”