On using your own eyes

We are at a friends's house for Thanksgiving

One of the guests is a teacher who is a retired Special Needs teacher. She has worked a lot with Autistic children over the years

We are having a great time at the party and we have brought along R's Macbook ( actually DH'sbut when travelling it becomes R's )

He is on the Playhouse Disney Site looking at Ooh and Aaah ( two monkeys )

I and the hostess are standing around the kitchen island .

The retired teacher looks at what R is doing and says " he is liking the screen becasue of all the shaking and the moving images.. Autistic children love things that move"

I look at her - a little taken aback

She has just relegated what R is doing to a state of mindlessness

( and he is ever mindful )

A while ago  I would have felt stung

But not today

I look at what R is doing and reply

"not at all .. he is playing a game - if you click on the instruments you can make the monkey characters play that instrument .. and you can keep adding different instruments till it turns into an orchestra .. he loves music.. you see "

She looks again at what R is doing and then nods her head

Its an important developmental leap for me to  trust our own eyes the most

A friend of mine - Debbie - gave me some great advice a little while ago

I was expressing anxiety about going to India

This is the first time we are going after Autism.

I am not looking forward ( to put it mildly ) to having to explain Autism to everybody

But this friend said that the important thing is to look at your child through your own eyes and not as others see him

I have been chewing over this profound thought

And this Thanksgiving I got to put it into practice.

My anxiety over this has simply dissipated with this simple perspective

This perspective is very different than learning how to cope with people's reactions to our kiddos not looking like other kiddos

I knew that always

Followed the principle of - if R was not bothering anyone  and not hurting himself - he was fine to do what he wanted 

Even if that thing was to coo at all  aisle numbers, sit down in the birthday aisle gasping with wonder at all the birthday cards around him that said  you are 1 .. you are 4 and so on and so  forth

This perspective is about not letting just anybody's else's impression of your child influence your opinion of your child

Its about being selective about the persepctives and the advice we special needs parents get ( sometimes on a daily basis )
That was about steeling oneself ... learning not to mind .. training oneself to not always be in the mode of correcting your child ( for things that are not even wrong )

This is about not minding at all

This is better!

Acceptance

This weekend we went to Chattanooga for a visit with some close friends.

These are such dear friends and we have been known each other for a while

And yet I was a little nervous before leaving.

One of these friends has a daughter the exact same age as R- we went into labor at almost the same time

Sometimes meeting neurotypical children is a bit of a shock -

Especially when you have a child like R whose expressive speech is so severely limited

But these friends are have such open hearts for us ( with all our differences )that R is folded into this group completely and naturally

Many people say that when they enter into the special needs world - friendships die

For us however it seems like the good friendships have become  stronger and the weak friendships have faded ( not ended .. just faded away ) 

As though Autism was kind of a filter that separated the wheat from the chaff

We planned best as we could - with written schedules etc

I braced myself for a shot of reality- for my bubble to burst 

But all my fears are unfounded as R is an  angel

Interested in everything

Well mannered and charming, affectionate and sweet

Here is R with his birthday friend E

E's mum whispers in my ear - your son has better manners than my daughter ( her daughter is a complete darling and a perfect doll but her  casual  compliment is music to my ears  )

Really she is too wonderful and makes it a point to compliment R on all his special gifts  -his reading etc

The trip starts really well as - the   Creative kids museum is PARADISE for autistic children - filled with things to touch and feel

Water play,  Magnets, Musical Instruments

We have dinner at Sticky Fingers and R is just awesome there as well- eating his Chicken Fingers with gusto

Sitting quietly in his chair ( only needing 1 or 2 bribes of Dum Dums ) and coloring ( poorly)

Then we go back to the hotel

The day has been so tiring that I am sure that R will burst into tears when we go out again

But here the power of the written schedule comes into being .. where its clearly written that the last thing on the list is Christmas lights

He simply LOVES Christmas lights.  And he is ecstatic at the entrance of Rock City to see the giant Star

There is LOADS of walking inside but he has a blast

Unexpectedly-He even sits on Santa's lap

It seems this fifth year ( which BTW is supposed to be end of all developmental leaps ) in fact is showing promises of good things to come

Its the season of gratitude

My heart just brims with it

For friends who have stayed true and strong in spite of the road that life has taken us on

For wonderful  friendships  that we have found  because  of this journey

For a marriage that challenges have strengthened 

For a child that continues to blossom well beyond what "Early intervention" folks would have us believe

This journey into special needs land is settling into an an unusual  place.

A place of acceptance

An acceptance, that I once thought meant giving up

But which I now see as a lovely place of grace

A state of mind , a way of being,  that is both charmed and practical

This is my new normal

And its a good place to be

Speak softly

“You know one thing I know about C is that he is always listening ... we went back to my mother’s house and he told me all the time when he was 3 and I was reading him a book .. What that book was .. what the story was..The funny thing is I remembered that day clearly as well .. I was just thinking in despair how he was sitting there just like a lump on a log”

One of my friends is giving me this great advice- we have met for lunch at Romano’s. This is a year ago

She is a friend I met at a local Autism support group and we just hit it off. Of course since we both are working moms with kids with special needs – we have basically met once in the past two years.( though of course we keep wondering why we don’t meet more often – I seem to have such a plethora of wonderful people in my life that I cannot find the time to really connect with – I suppose its better than the opposite alternative )

I made a mental note of this very good advice.

Many adult auties have expressed this same wish.

They have talked about how much it bothered them that their parents spoke about them – and their worries about them – in front of them.

Unfortunately I seem to be one of those people destined to learn from my own mistakes – rather than learning from others

As R’s receptive language was a long time in coming I thought that this must not be true for him!

Then a few months ago I taped a therapy session.

When I was going through the recording (by profession I am a researcher )- I automatically switched into researcher mode and started paying attention not only to his enunciation – but to his body language

Heart sinking – I realized that he his entire body language would change – each time I said something bad – expressed some worry

When I said something good – he would perk up and would be able to say the next thing better.

With remorse I thought back to all the times when I discussed him - in front of him

Slowly I am coming to realize that even in the situations where he is CLEARLY doing something else – he is STILL paying attention when anything relevant to him comes up( the way we are able to pick out our name in the airport in the din of announcements- but filter everything else out)

Yesterday as we were out in the front yard – and Mrs C and J stopped by to chat- R ran away to explore whether the red berries in the bush were skittles or not.

Mrs C asked if R was liking the Fall leaves .

I replied that his Dad has made a pile of leaves at the end of our backyard

R swung into action – picked up DH’s rake and jumped into the pile

The other day when a friend gave him a dinosaur which he ignored – I saw him a minute later – researching dinosaurs on the internet!

Now that I am paying attention - I notice how much attention he is paying

Hopefully some mum or dad is reading this and making a note to be careful of the worry they express in front of their children.

Words can wound deeply and our children are so sensitive

It really is best to presume intellect and to presume comprehension.

And to speak softly because someone is listening

Weekly Round up W/o Nov 16th

Monday

it was a simply gorgeous day and I got back home in time.

DH re-engineered our I-MAC so its now super powerful .

Its funny how R gloms onto the best computer- all of last week while the I-Mac was slowing down he was lusting for DH's Macbook .

Today,  because the IMAC is back and better - he will not touch the Macbook with a barge-pole. He shed many bitter tears as DH was loading programs into the I-Mac - alternately pleading and weeping - for DH to move away so he could get on it.

When I suggested he use the Mac-Book - he looked at me with disbelief at the preposterous suggestion

I quickly wrote down a schedule to play out side and we went out

We jumped and swung and played with all the leaves

I put him to bed tonight and he was VERY smug though I struggled with insomania tonight as well .

He has been googling different versions of the song"One two buckle my shoe".

I think its very confusing to him that I have taught him the song with 2 different endings ( Nine Ten - A big fat hen and Nine Ten - let's do it again) and so he is looking on the internet for what is the right version.

This turns out to be a hopeless quest as the song on youtube goes all the way to 20.

Tuesday

DH and I have a date lunch which I enjoy very much.

Much to our amusement, have noticed that the server at this Asian restaurant  - puts only the Asian people at the window tables.( we go here almost weekly )

Whereas all the Non-Asians usually have to sit towards the center. The window tables are visible from the outside I suppose they want to position themselves as authentic Asian.

But I have a plan today and as soon as I enter - I point to a window seat and tell her firmly

 " I want to sit here - is that okay "

She is nonplussed and is forced to say "Sure"

Its a moment of great triumph for me

Becasue of the travel  we  have not been able to get together on our own and I miss it a lot

Usually we try to talk about non - autism and non parenting issues - but today we forgot about this,

Nevertheless we  a really good chat about autism ( casues and cures )

DH is very smart and very sceptical so he is always interesting to discuss things with !

He beleives Autism is a genetic mutation - nature's response to the way the environment is evolving . He believes all the  other problems that can co-exist with Autism( Apraxia ADHD etc)  are separate from the Autism itself .

My theory is genetic predisposition + environmental insult= autism and then the modified sensory system - leads to the autistic features like stimming, poor peer interaction


Both of us are trained researchers and we frequently find ourselves drawing different conclusions from papers and articles that are published about causes and cures of Autism .
It seems so often that they author has a point of view which is biased and which they are trying to sell

An extreme example-  the Cornell Study which said TV casues Autism -
The data showed that colder and rainier areas have more autism - the authors saw that there were more cable subscriptions in these areas and concluded that TV casues Autism

We both agree though that Autism is a gray area land and even after 2.5 years of being really absorbed in it - ( and I mean really ) we still dont know a lot

DH said "Sometimes I dont even know what Autism is anymore "

And there is truth in that

I really think what we have done -which has been to focus on what R needs rather than what he has
is the right approach

We just need to do more of it

In the evening we really have a nice time jumping and playing with the leaves. - There is a mountain of leaves that DH has piled up in our backyard which affords  great joy to R !

Wednesday

I have to stay late in the office . Sigh !!

When I get home, I  am surprised to find that R avoids me -he averts his gaze and looks fixedly at the computer

I go to ask DH if R is in trouble.( as he tends to avoid me when he has a guilty conscience )

DH says that R broke his glasses in school

Sure enough when I get back to the room - I see R is rummaging in the drawer where we keep the spare glasses

He has a wound on his nose ( where he scratched himself and where the glasses now rub and so he keeps taking them off - which is how they broke )

I hug him and tell him not to worry as I should have cut his nails and I know his nose was hurting. Its really my fault and not his.

R cheers up tremendously and we run out to play in the damp and wet evening

A special birthday for a special boy

I do NOT  think R really enjoyed his first 4 birthdays .

This had us sad because  birthdays are so important and we really want R to enjoy them

Birthday 1 - we did a birthday party with a friend - who also had a baby on the exact same day as R  - R seemed stressed

Birthday 2 - Thought he would enjoy more if we had  a party at our place - R clung to me all evening and ignored everybody

Birthday 3 - we gave up on the drama - but my mum was visiting and not feeling well so we took her to the doctor's. Fortunately she was fine but we were too exhausted to do anything special

Birthday 4 - my MIL was here. We bought lots of presents for R which he sort of liked and sort of ignored- Plus I had gone for the Floortime conference in DC and we drove back that day( 500 miles from DC)

Birthday 5-  But this year on his fifth birthday - I think we finally got it right !. ( Rachel he was enchanted with the gifts this time )

There are two reasons for why it worked

1. We finally figured out what to do

2. He was finally ready to enjoy it .

First, we started telling him about his birthday almost a month in advance

One very interesting thing we noticed is that he has been researching what a birthday is on the internet this past month .

Its so interesting that at the age of 5 he is already a pro at looking for  info on the internet ( another thing we caught his researching is potty training - which he spells as "poddy")

 He has been looking for you-tube clips on birthdays  all this month

He has also been asking to see the TV shows that  have birthdays in them - like "The Birthday Machine" of Little Einstein

We asked his teacher to do a little birthday party for him and we send cake- DH iced it beautifully and wrote  a message on it -

This is a BIG hit  (  all the you-tube clips he was watching appear to have cake  featured as a key element in the birthday- so we really lived up to his expectations there )

His teacher is a darling and was more than happy to do this. Apparently his birthday party was a grand success

We got him a card shaped as 5 as well as a candle in the shape of 5 - which made him just ecstatic.To his mind this is not only logical but also includes his great love - numbers!

Even the presents we bought were all thoughtfully selected to be custom to his taste

The box of Dum Dums ( we bought a HUGE bag and I sorted through them all and picked out all the Blue Raspberry ones and the cherry ones which are his favorite ).

Plus the box which is in the shape of a present that is shown in most children videos - was a big hit

The other big hit was the furry ball

We also got him a scooter that he has been eyeing and the giant piano that we play with feet .

These - the more big ticket items have been met with lukewarm success. But his grandparents wanted us to buy some grand presents on their behalf. And so we did

Finally we ended with dinner at McDonalds . It was Monday night so the restaurant ( and we have a really nice McDOnalds next to us ) was empty so we let R climb all over his chair as we were not bothering anyone !

I think the three of us had the best birthday possible

It seems to me that - its like this with all of our life.

We have to abandon all the ideas of how things are  supposed to be.

We have to figure out what works for us and we have to courageously and single-mindedly pursue our happiness - un-distracted by any preconceived notions

Life's scenic route has come without a road map

But we are enjoying the ride

Happy birthday R

We are at Toys R Us this weekend looking for presents for R ( for one of the curious things about him is that he wants so little- DH and I must rack our brains )

We browse and make our list – wondering if we will get lucky this year with what we get for him !

On our way out - I stop by some electronic maracas – wondering if R would like them.

DH and I are engrossed wondering whether these would work with our Wii

I turn to look for R

And he is gone.

I run out of the store (for the stupid Toysrus has automatic doors)

He is not there

DH and I run to all the places in the store that R loves – the bikes( where he tried to climb on all the grown up ones- though he can barely ride his trike ) , the cars( where he loves on the car with the Barbie painted on it much to DH’s chagrin) , the Thomas the Train display which he adores ( while ignoring the identical one at home )

In a few minutes I have imagined a million awful possibilities!(Are mothers programmed to be the worst pessimists? Every mum I know is willing to believe that her child is in imminent danger at the drop of a hat)

As I am thinking that I will have to get the Toys R Us Staff to help us – the phone rings and DH is calling to say he has found R peacefully reading the books.

I am so angry with him

I wait by the entrance

When DH and R come out-I hold R by the shoulders and give the furious lecture that parents all around the world give their children they almost lost ( what a wonderful word "almost" is in this case- it makes all the difference in the world )

The “how- many-times-I- have-told-you” and the “why-cant-you-listen" and “do-you-know-what-could-have-happened”

I know he is going to cry

But I don’t care

I am too angry to care!

But - instead of crying – R holds my face and says “shoi ma” ( Sorry Mama)

He strokes my face – smiling gently

Tears fill my eyes –as I realize that I was not angry at all

I was scared!

I hug him and tell him he should stay close to me and that I would die if he got lost.

It just amazes me how this little child sees right to my heart.

Even the people who know me inside out, misunderstand

But never this child!

He knows what I am feeling .. sometimes even before I know it

I think back to the morning, when my colleague was describing a scene in the book Blink.

The author of the book, Malcolm Gladwell, talks about showing the movie “Who is afraid of Virginia Wolf” as an experiment.

In the experiment, auties and non-auties look at a scene from the movie .

Eye tracking reveals that the auties were looking at the things in the scene and not the people. With this my colleague concludes that auties are immune to emotion and all about logic.

I tell her that R is not like that - Not at all

He is more astute than most people I know

In the 5 years that I have known R – he has taught me so much and given me so much love

On his birthday today, I am so full of thankfulness for this wonderful, beautiful, miraculous child.

Its hard to believe that 5 years ago I did not even know him

Happy birthday sweet love!

I am so glad to be your mum

And he is back

R has chosen his sweatshirt

( I am proud to see he chooses his trendy  GAP over his other options  - he is my son- he instinctively chooses better brands -GAP over Osh Kosh,  target over wal-mart, real crocs etc. DH is the opposite of me and R and we get teased a lot for this  )

He runs his finger  over the logo on my sweatshirt

Tommy he reads ( for Tommy Hilfiger )

He puts his hand on my stomach

And looks up at me puzzled

I interpret his look correctly  and say " that means tummy not tommy "( for to him this is mislabeling as the word is written over my chest )

Its like this

All evening

Little conversations

Constantly pulling my face to him so he can kiss my cheeks and forehead.

Stroking my hair

He makes me sing songs.

Corrects me when I do an action incorrectly 

Urges me to bury him in piles of  leaves

His cold is leaving 

And he is back

Oh how marvelous to see him be himself again!

Happiness is washing over  me like a great tide.

"Its ridiculous how much we love our children" said one of my friends the other day " they will never know"

And its the truth

Far beyond any DSM IV criteria,  for me the measure of good times with R ,  are his "with-it-ness, his connectedness  and most of all his happy glow

When these are present - I can look askance at all the doom and gloom predictions that are handed to Autie parents! ( like the Buddhist saying goes "no one can look at a seed and say which one will grow and which wont ")

When these are not there, I am run with anxiety

I know there will be bad times again in the future

But for now

God's in heaven and all is right in my world.

To be an observer of your life

R lost his glasses today.
Its not a big deal. For such a small child – he takes remarkably good care of his glasses

I came home right on time, so DH could go for golf and I could do some Floortime – but Dh has waited a couple of hours already at Sam's without success and so I must go today to the Eyeglass place
And so I do
Which is a bit of a disaster
R is spacey
Pays no attention.
( I do the hold hand tightly +grit teeth+ drag – which is a bit extreme for me – but for some reason I have been very irritable these days – PMS + little sleep is a bad combination )

At one point he just randomly takes his shoes off and sits on the floor
Eyeglass world is inhabited by quiet adults – there are no rude little kiddos to distract away from R
I am simply appalled by his behavior
I pointedly do NOT explain apologetically (which I have done before ) that R has Autism
For Autism ( the kind that R has ) is no excuse !

The customer service lady who is taking care of us – is an angel
She says nothing at all – simply assumes that R can understand everything – giving him directions ( hold this, look through this )
Which he ignores of course

I need to be alone and I take a walk by myself in the evening

Suddenly I realize that I am actually melancholy today.

Some days (and I am blessed that these days are rare for I have a hopeful temperament) the mountain of things that R has to learn seem especially steep
How much more of Do this and don't do this must be there in my life?

As I approach the top of the hill I think about how I am the queen of giving advice (especially about looking on the bright side ) to my friends of special needs kiddos
Then why do I get so nonplussed and paralyzed when I am in a tough situation myself?

So I try to imagine K as a separate person from me

And try to imagine what advice I would give K if I were not her.

With a little distance from myself – all is clear
His spaciness is due to the chaos that has been October ( 5 out of town trips would be disorienting to a typically developing child – let alone an ASD one ) as well as the cold that has been plaguing us
I need to realize that this too shall pass and also step up on the sensory diet and the written schedules

A Buddhist saying goes "All know the way .. but few walk it ".

This is so true in my life.

It seems so often that I have all the answers to my questions
It's my ability to see the answer that fails me

But today I see it.
And tomorrow will be a better day.