Getting to know R

R will be transitioning to a new school this fall and I wrote this letter for his new teacher so she can know him a little better –
Apologies for the long ( and boring ) post – but it is good for me to have a record at a point in time. When reading the blogs of other moms I frequently want to know more about the child’s personality – so if any of you moms and dads do the same in your blogs I would love to read it

What I would like you to know about R ?




Our hopes and dreams about our child ?
Long Term: Happiness, Self reliance, Goodness
Short Term: Speech, Social skills especially with peers, overcoming sensory challenges

What R’s personality like?

Ris a very sweet, loving and intelligent child. He loves hugs and kisses. While he sometimes ignores other kids he is extremely loving towards family, his therapists and pretty much most adults
He is very gentle and feels things deeply so we are very sensitive while disciplining him. He can be anxious.

Hyperlexia is a huge part of the way in which he interacts with the world. While we do use PECS, we find it equally helpful to simply write things down for him
He loves the computer, TV and other things with buttons
 
What can R do ?

The key to things R can do lie in motivation. He has minimal motivation to show off and most of the things he knows we have found out by observing him rather than asking him and him showing us. One day he just arranged the foam letter to write the entire alphabet backwards

R can read, add, identify all the planets of the solar system.
He knows shapes, colors, and numbers, letters.
This is a picture I took of him last year where he has arranged the letters alphabetically and then the numbers on top of them. He can count up to a million


He has a stunning memory and a great sense of direction

What does Rneed help with ?

Language
R’s greatest challenge is Severe Apraxia – even with a lot of therapy this challenge has been by far the most daunting for us.
He also does not process things best through hearing them. We find its best we speak to him slowly and with few words ( but with lots of affect and emotion) – so instead of saying something like “Do you want to bounce on the ball ?” we say “Bounce?” Ball”?
He thinks in the written word and in pictures

Sensory Challenges

He get easily disorganized and is very stimmy when stressed ( like new situations) – Physical activity is good for him as is loving structure
He also has fine motor challenges

Social

He is quite adroit socially with other adults and knows how to pull at people’s heartstrings. With peers, he is starting to be interested but since he has not had much practice with peers he does not quite know how to


What my child likes and dislikes?

Likes
1. Being praised and loved
2. Computer( nickjr.com, qubo.com, playhousedisney.com, starfall.com)
3. TV ( Blues Clues, Little Einsteins, Happy Monster Band , Mickey Mouse – pretty much any educational show )
4. Music
5. Books
6. Written words
7. Toys and puzzles about numbers, solar system, alphabet etc
8. Sensory Motor play ( Trampoline, Swing, Jump , Tight hugs, lolling around in a comforter)
9. Junk food ( Sprite, Junior mints, McNuggets, Pizza )

Dislikes
1. Being told no, not having things his way
2. Being alone
3. Noisy chaotic places
4. Lack of structure

How R learns best ?

R is a visual learner. Harnessing his motivation is the best way to teach him. Music is another great way. As is the computer

What medical problems or allergies does he have ?

R has gluten intolerance so most of his food home is gluten free. However he is allowed to eat Pizza at school because he loves it and we cannot bear the thought of the other kids eating Pizza while he cannot LOL
He also has some seasonal allergies
He has poor eyesight and wears glasses

What Special Equipment does my child need ?

PECS /Visual Schedule
Sensory breaks throughout the day – so access and encouragement to use the trampoline, bouncy ball and swing

Additional things we would like you to know

Ris a child with great potential and many challenges.
We are not trying to fix him or trying to make him a “normal child”
We just want to help him be the best and happiest R he can be
R is incredibly precious and special. Please love him lots and help him reach his potential.

The rules still apply

R is a screen addict.

If we let him, he would watch shows and play on the computer several hours a day.

In fact not only does he want to watch shows but they have to be totally on his terms – he wants the remote and he wants to rewind and fast-forward to EXACTLY the segment he wants to see

I struggle with this screen addiction

On the one hand he has learned a lot from the computer – from fine motor skills to teaching himself to read and spell and math etc

At the same time this addiction takes away from "playing time". Plus I think also feeds into attention deficit and also

Most of the time I am somewhat decent about keeping screen time limited but with all the travel these past 2 weeks he has been honing in a lot to the screens

Yesterday I decided to just bite the bullet and took away the remote and turned off the computer ( thank you Julie for the inspiration to live life unplugged )

R threw a first class tantrum and also demonstrated his ability to manipulate

Angry Dervish dance ( I am mad at you )

Followed by banging his head but always mindful of his safety – banging it on a cushion ( I am in despair )

Then pushing me out of the room ( I no longer love you )

And when all else failed – sitting on the floor with tears flowing down his huge eyes ( oh poor pitiful me )

As I marveled at his ability to manipulate, I also realized that many a time being a good mother means not being the fun mother

I held R nose to nose and told him that I loved him so much I did not mind him being angry at me.

We went on to have a great evening outside on the slide and the swings.

So often it is easy to excuse our special needs kiddos bad behavior as a byproduct of their special needs

Because often its true.

The over-sensitive child can so easily be seen as the rejecting child and so on

And while we do need to make accommodations for things that are really un-helpable –In our case R's problem with eating a lot of textures( we are still pureeing veggies for him ) or his problems with sleep ( he sleeps with us still and has a late bed night )

On some other things we do not make accommodations. Like in our case throwing ill mannered tantrums – even when a lot of them arise because of the special needs.

For some kids they are really unable to manage their tantrums due to sensory challenges - – In R's case I truly believe he is testing his boundaries

Now mind you this does not eliminate the tantrums- R is no angel – but we are really single minded in giving him the message that we do not like it.

I am a proud mother of an autistic child.

But I would be mortified to be the mom of a really ill-mannered one

Special needs or not, the rules still apply

 

 

 

tumultous weekend( not about autism)

This weekend Autism had to take a back seat . My good friend is getting married in October.
We drove down to Atlanta to spend the weekend in a big city and also help my friend in selecting her lehnga ( sort of a skirt )

The wedding theme is East meets west

The bride is my good friend ( indian ) the groom is from Minnesota ( I really like him )

The bridesmaids are white and the Matron of honor is brown ( me LOL )

I love the big cities - I went to Trader Joe's one of my favorite stores and bought this - See what I bought




I love their simmer sauces ( of course now that I have said this out loud- they will all turn out to be really bad recipes )

We stayed in their Midtown condo and I rode in their BMW !!







The weekend started out very nice- it was so great to hang out with these good friends and see a very different kind of life.No kids , no backyard , no suburbs, walk to the grocery store etc

However alfway through I got some very bad news!

My hale and hearty and completely adorable nephew suddenly started having seizures and went temporarily blind . This story hopefully as a happy ending as my smart sister took him to one of the best child neuros and turns out he had a dead tapeworm in his brain( its more common than you would think - just google it )

There is a good chance that this situation will resolve on its own ( praying hard )

Also one of my Profs from grad school ( gentle eccentric ) suddenly took a gun and shot his wife and two other people that he was acting with in a theater - he is still at large

Heartbroken for their kids - 8 and 10

Poor R took a real back seat and spend a lot of time o the computer and also had loads of allergies ( turns our he is even allergic to dogs )

I will be a better floortimer this week

SOoC Saturday - march of dimes

A picture of the March of Dimes Walk for SOOC Saturday for Slurping life writer ( check out other great pictures at her blog - she is on my list of blogs )
Taken from my friends' patio on the 8th floor of her midtown condo in Atlanta
So many people connected by one deeply felt cause
And doing something about it

I know the nicest people

Life in Autismland has one quite spectacular benefit.
I know the nicest people.
Not just the fellow moms of Auties and friends who knew me BA ( Before Autism ) and have supported me so well –(  though they are spectacular in their own right )

But some other people who I would never have known otherwise

R's therapists – E, S , M and T are such people
S is one of R's therapists – she is 20 cute young blond. She has a brother with ASD and is little mother to him – she works harder than anyone I know

When I reflect back on my priorities when I was 20 ( look cute for DH , do well in school ) S's maturity is impressive indeed .

This month she has been looking less than ebullient.

I have been trying to offer wordless sympathy – making Pecan brownies( s loves sweet stuff ) for our team meeting – handing her a bowl of chicken tortilla soup etc

The bowl of soup she met with a smile–" Thank you I am trying to cook at home these days. I bought some ham, cheese and bread yesterday"( this should give you a idea of just how young she is –making a sandwich=cooking)

Finally one day when I see bruises on her arm I can stay wordless no longer and ask her what's up

She says"I have been getting beaten a lot lately…… There is this very aggressive boy I am working with"
Seeing my shock – she quickly explains

" He doesn't mean it.. he is a darling in fact . he is just very frustrated these days and having lots of behaviors."

I am so spoiled by super sweet and gentle R - always gentle always sweet - who is the only special needs kid I know well that agressiveness in other children( thoug of course its usually a result of frustration rather than a desire to hurt anyone ) always shocks me.

On my asking her what she does when " getting beaten", she says " I just keep tell him to stop and repeat in my head . I will not cry "Some of the nicest people live in my world now !

Some Pointless Points

Today while at lunch with an old friend I got to talking about all the biggest wastes of time on first entering Autism Land

First is the blame game. This is the list of all the things we could have done to prevent Autism. ( This will later transform into the guilt game - all the things we did not do to cure the autism)

Second is the search for the answer - you mommies out there know exactly what I am talking about LOL - Its the one answer that will tell us the cause and the cure! After 2 years of intense searching I am still not close to the answer

The third and the strangest one is wasting time over whether autism is a good thing or a bad thing.(There are the Neurodiversity folks who belive that Autism is a way of being and there are those that feel that Autism has taken their child away from them.) Both points come from love. As parents we want the happiest outcome for our children out of love. Autistic adults are trying to stand up for the rights of other auties ( again that comes from a place of love ) Again after two years I still don't know if Autism is a good thing or not - R definitely is
I simultaneously feel blessed and lucky to be R's mother while never wishing Autism on anybody

If I were to advice a new parent I would say this
1. Its not your fault- guilt will sap your energy and harm your child.

2. Seek less, do more. Play as much as you can with your child and love then unconditionally. Love yourself lots

3. Ignore the camps- its not necessary to either celebrate or mourn Autism. The only thing important is to celebrate your child!

Yet this post is pointless because mothering brings with itself a sure mechanism that most of us will fall into these traps
I know I still do.

25000 mornings

A corny ad was coming on television - it was advertising the beauty of Michigan
But it started with the line
All of us have roughly 25,000 mornings - give or take

It so made me pause - so funny to think of the days we have as a finite number of days

With our mortality an immutable fact it is truly a wonder how much time we waste in all the useless emotions
I shook off all the work related angst that is an undercurrent in my life these days

Anyway the day was sunny( and we were perched at the edge of a rainy week )
So we decided to leave all the chores ( cooking laundry etc ) and spend the day in the park

What says Spring more clearly than wearing shorts for the first time,running in the park and flying a kite ?

Living each day as though it was your last - has always seemed so silly to me- would you not buy insurance , would you spend all your money , would you make maudlin speeches to all your loved ones , would you eat all the chocolate you could find
As I would surely do if it was my last day
But to live each day as though it were one of 25,000 ( give or take )
Once gone, irrevocably lost
Now that makes complete sense

SOCC- Straight out of the camera - Saturday

I have two images today to share
The first that has special meaning to me is this unpacked bag
I am back home
I am home
I am home





The second is of an impromptu afternoon nap after a day spend outside
Though like Niksmom - I should probably write a post called "The best Laid Plans" LOL
My resolution to work on Guilt was well timed -As R for the first time greeted my return with not just a dance of joy
But also with tears of reproach ( who says Autistic children cannot express emotion- R's large eyes were pools of reproach and betrayal when he saw me on Friday )
He has not let me out of his sight all last evening
So I just spend all day hanging out with him
And I think he is feeling a little better now

Guilt

Last week a neighbor came in and pressed this pamphlet from Curves in my hand.

She talked about how much she loved going and how I should really go

She is not really hinting at my corpulence- as she has also bought along a plate of chocolate chip cookies

She is worried about me – "I am thinking of your whole life K .. all you do is work .. you need to do something for yourself.. you are either in the office or doing things for R .. where are you in all this "

I hear her and appreciate the kind thought

But I do not know how to explain that the LAST thing I need is one more thing to do (even if its for myself)

One more thing that takes me away from playing with R would be more than I can bear

Here is the unique burden of mothers of ASD kids –

The wide spectrum of ASD and all the stories of the "recovered " children- all these parents that basically devoted their entire life to therapies - tells you that with all the right therapies and enough hard work your child may recover

The corollary of that is, if your child does NOT recover – you did not work hard enough

This is the sad secret that many of us mums carry in our hearts!

We did not do enough, we failed our children

Its one of the reasons that I feel almost a constant sense of guilt ( in fact from some of my virtual friends I learned that not just the WOHM - but even those moms that homeschool their kids and are Stay at home moms- basically doing the ideal – feel guilty)

All the daily chores of life – the laundry the dishes working – and worse work trips – all the things that keep me from playing ( read that as building new neural connections )

People say grief has many cycles –I feel that way about guilt.

Someday it's my primary feeling on parenting , some other days I am mellow about it

It ebbs and flows insidiously eating away at joy

Today at the end of a corporate retreat that I was so dreading( as it meant two more evenings that I am away from home and R is probably playing on the computer ) and yet I can see has been good for me another thought has been blinking on the radar

What if I gave up on perfection?

But focused simply on the most I can do – when I can do it.

The stories of all the warrior mothers who inspire us and fill us with guilt are told and retold

But what of all the stories of those parents who worked just as hard – without recovered kids- ( I know many of these mothers and admire them so much )

What if it isn't a magic formula of "tons of therapy"=normal child

What if transformation isn't even the point?

For deep in my heart I know R is a gift – inspite or maybe because of Autism

A fellow blogging mom said that she let go of fear today

Today I am starting my journey of letting go of guilt

  

Maybe they can

 

I walk down the stairs laundry basket in hand and martyred expression on face.

I tell my husband ( sitting on the lazy boy and watching the news )

"I hope watching me slog , is not ruining your joy in watching Television"

Of course what I intend is the EXACT opposite of what was said

My intention is solely to make him feel guilty

My husband – master of the game – serves back

"its nice to rest for a change"

( This game of iworksomuchharderthanyou is a game both DH and I are adroit at and gives us much secret enjoyment. I once told him that he should never leave me because we would lose an entire language –an entire world of words and rules and games that only the two of us know. ) . In fact I have customized and unique lexicons with my sister, my parents , old friends anyone I have a history of shared experience with . We all do.

Still sometimes when I think of all the layers that language has – I despair of how a child with Apraxia- who is only now learning to label( oh sooooo slooowly ) will ever navigate these tricky waters.

Yesterday though in the bathtub R – surprised me

He was in the bath tub and I went out to empty the dishwasher but I told him to stay in the bath – ( he has a tendency to wander around and if I leave the bathroom for a minute I will find him crosslegged on the bathmat – reading a book )

Well when I came back – sure enough he was walking in the bath room

I feigned horror and said his name sternly

R virtuously said "potty" (meaning I was only getting out of the bath to sit on the potty ) and went and sat on the toilet ( of course he did not need to go )

But my heart sang at the craftiness!!!

Reminded me of something that a delightful autistic boy said , this is the second autistic adult – I met

My neighbors friends ( amazing people ) who live in the North and who were visiting them and have a 17 year old son who has Autism – clearly very high functioning - though he said he did not talk till he was 5

Mainstreamed and all that - He was soooooo nice and sweet and smart

When his mom was asking me about how we got our diagnosis - I talked about how unexpected the diagnosis was as R was so attached to us and we had previously thought of Autism was a kind of attachment disorder

HIs mom said - J is very attached to me and J and she reached across and they held hands

How darling is that

We did not get much time to talk as they- his parents were very interested in our story of coming from India- all the Indian artwork that we have in our house

Anyway I digress - but I was reminded again of J's words when he was leaving and I asked him if he had any advice for us

He said "Just because R does not pick up on something .. don't think that he will never do it .. when my brother and I started playing ....( some video game ) he picked it up in a hour and it took me 2 weeks ... and now ( with a shy sweet smile ) I am
twenty times better"

I will drink to that

 

 

Weekend update

All my life when we were given homework in our summer hols .. I would end up doing it in the last week ( vowing to do much better next time but of course not doing it )
I am the same
So I did all the things I had said I would on Friday
Except that I did them all on Sunday
First , Visual Schedule book looked something like this

I bought this from a woman on Ebay more than a year ago - The hardest part about the visual schedule is having all the options and also having the scheudle with you
R really understands it - all the pictures have images as well as words so he can read them as well and it really helps him understand what comes after what
I ended up keeping a little pad so I could write things down as well

Second ,Pretend play Scenarios
1. did several versions of a tea - party ( failed - no interest at all)
2. Did several scenarios of doll playing with a ball( that you can see in the picture as well ) - this is a scenario R has created for himself because of a Blues Clues Book


Third Picture Book - Book about R
Collected all the materials - I think I am going to start with the simplest and cheapest . A power point presentation of R's day with captions etc
- like
"R likes to play in the sandbox" with a picture like this



( with labels on everything ) etc
I plan to end the book with simple what questions like
"What color is the sandbox?"

SOOC Saturday Morning

Here is something I am doing this Saturday for Straight Out of the Camera that Melody of Slurping Life does
here is R just loving on some flowers on our evening walk today
Its been a long grey winter and each time it looks like Spring is here a cold wave comes right back. Today was a grey dreary day but it turned out pretty allright

Big Plans this weekend

"He is reading the cue cards upside down" laughs E at our ABA therapy team meeting

She is referring to the set of index cards that they use to cue R to do things

They have these set of 100 cards or so which have instructions on them
like "Clap your hands"


Quick tutorial on VB/ABA
-spoken language does not come naturally to many Autistic kids - the idea is to teach language through repetition
you say "Clap your hands"
And then you put your hands over his hands to demonstrate the action clapping them and then reward him ( called Errorless teaching )
Ultimately the child starts associating the words with the action and also with the pleasurable feeling of being rewarded

Anyway - E and S shuffle the cards at the beginning of each session and were wondering how R seemed able to anticipate and do the actions even before they said the words

They finally figured out that he is reading the cards upside down !!!

That combined with Julie's post on visual schedules is the final impetus I needed to definitely do it this weekend

So this weekend I plan on the following:

1. Visual Schedule
2. I want to do a pretend play game
3. I also want to write a story for R about R

The story idea is also something I have been thinking about for a while but have done nothing about .You see the true tragedy of Apraxia is in its secondary effect - without spoken language the child does not develop the - crucial - ability to ask why, what type questions and therefore is does not practice reflecting about things

Example a typical child will listen to a story about Red Riding Hood and feel angry at the wolf, scared for RRH etc



Now a child like R clearly comprehends the meaning of written words - but his mind processes them by picturing them written rather than sounding them out

Is it possible that a child who cannot speak very much could think about these things if they were presented in writing ?

And so perhaps a written story ( really I am aiming for something very simple ) would help R think about events of his life in a way that will promote higher level thinking

I have big plans this weekend as you can see!

Restart

This whole week has been such a washout

R and I both have had colds and are all sinusy and grumpy

I have been suffering from insomnia

Work is busy

We are both very depleted

R is less interested in playing and more interested in doing his own thing – he will snuggle and be affectionate just as always ( every morning I wake up with his arms tight around my neck in fact )

But he will not play

So example instead of asking me to blow bubbles in the bathtub – he will simply be counting with holding up all his bath foam number 1..2…3…4..5. and so on into the 100's

After one or two attempts, I give up

As always of course when stuck in these phases the best thing is to press the reset button

So tonight I am not going to think nor plan, nor try to play

Parenting a special needs kid is a marathon, not a sprint

Its okay to stop for a while

On Autism Awareness day - What is Autism

On my way to Chicago this morning ( for I am typing on my laptop in the plane)

I am entranced by these two bright little eyes on top of the seat in front of me. I smile at the child who has turned around to interact with me

My smile encourages him and he goes down on his seat and then peers out from the side . When I tilt my head and smile at him, he retreats again and then emerges from the other side.

Again seeing my smiling face he is emboldened and reaches out a pudgy hand to be touched.
I reach out my hand too

Such is the dance of social interaction

His mother turns around embarrassed " I am so sorry he is bothering you "

I want to say – don't be sorry .. your little boy just gave me a live demo of neuro-typical child psychology

I tell her " Please don't apologize .. he is adorable "

The mom gives the little boy THE look ( all you parents know the look J )

And tells him to sit down and fastens his seatbelt

The little child is unfazed

Even with his back turned to me, he reaches his hand out to me– a person he has never met before but must woo.

As the flight takes off- he turns his attention to mom and is now tryng to woo her – without being able to see
my face – these interactions are no longer satisfying.

Look mommy cloud , look mommy mountain
This dance of social interaction really is the key to neurotypical development

The urge to pay attention to social creatures, to imitate them, to woo them are the fundamentals upon which language and social development is based

As a baby and infant – you spend your time listening to the adults around you and talking to you – this lays the basis for receptive language

You keep wanting to interact with them – this lays the basis for you practicing the words

You want to impress them with all you know – so when mommy claps her hands as you say your first word – you want to say more and more words to get that gratification

The first interactions, the first back and forth communications start perhaps as early as 7 days

Practicing( and the key word is practice ) these back and forth interactions gives you the skills that you need to navigate the social world .


Now think for a moment , if the sensory system were disrupted so that the child could not see all of mommy/daddy's face – only parts

What if hearing worked differently and mommy's cooing sounded like yelling and felt scary( hypersensitive ) , or was not heard at all( hyposensitive ) -

Or every sound in the room ( the sound of a plane flying in the skiy , birds twittering,) felt like an assault so you wanted to tune it out ( or did not register at all )

What If the child( like R ) sought out a lot of visual sensation – wouldn't TV with its bright flashing lights be much more attractive than people . And If a small toddler / infant spend a lot of time in a passive communication format ( watching TV ) –instead of practicing the back and forth dance of socialization- what impact would that have on their development (Most of my fellow moms and das say that their Autistic children seek out TV – it gives them the visual input as well is something predictable – unlike human interaction which is so unpredictable and therefore scary – one dear friend infact calls the "Baby Einstein" series " Baby Autism")

If this happened, this dance would not even start

Or be MUCH slower

Or take MUCH longer

And would have MANY steps and mis- steps

And would be VERY dependant on the dance partner to not give up

With an unresponsive or overresponsive infant what would mommy and daddy do in return ?

They may think this child does not like to be cooed at. And stop cooing.

Or think that the baby doesn't's love them. And stop trying.

Or is too quiet or too good- and they are so lucky they should not mess with it.

Or the child is so happy watching educational videos- he knows his shapes numbers and colors – surely this must be a good thing . ( A 3-5 year old child who does not like stories- red riding hood , but is attracted to facts – like the solar system – should be a key red flag I think )

So while the infant is shutting out the very stimulation the brain needs to feed upon, the parent may be modifying their interaction too and reducing the number and quality of interactions.

Autism as defined by a fundamental inability to relate is very rare, I think

I have not met even one unaffectionate or unloving Autistic child

 ( this is one of the worst and stupidest myths of Autism I think-.If anything one of the joys of parenting R is that the spotlight of his love is shines in a tight circle and I am right in the middle of it.)

But Autism as a result of a different Sensory System( caused by toxins , or different wiring ) is what I see all around

Certainly it's the kind that R has -
Autism is a behavioral diagnosis - that is someone makes this diagnosis based on how your child is behaving
If they have the following three things.

1. Problems with Language( examplecannot talk )
2. Lack of interest in peers( other small children )
3. Stereotyped interest ( like a deep interest in numbers etc )
They can get the diagnosis of Autism

Now I am not saying Autism is all bad ,

Many geniuses seem to come with a touch a hint of Autism – certainly not being distracted by social urges will allow you to focus on academics – the third criteria of DSM IV – which is stereotyped interests is where the savant skills must stem from. So its also important to nurture their gifts and passions ( some of which will be a gift of Autism )

Still - early Intervention is critical - the ground work must be laid down for the social interaction

The idea is not to turn them into something different – but give them the skills that they will need to function in society

To help their sensory system to mature

To lay the path for our children's future happiness

As we get off the plane – my collegue- father of two gorgeous well behaved boys - who is traveling with me but two rows ahead of me says

" did you notice that annoying kid on the plane.. he was kicking my seat.. constantly chattering .. pooped TWICE "

"No" I say "I did not "