To take joy in our children

Little C who is 4 years old  is styling my hair  with her play set is asking me a question

What color do you want your hair to be? You can choose pink or purple? 

Are those my only two options? I ask

Yes ! she nods solemnly...

 "You should choose purple" she further  advises - after taking my skin color and clothes into account!

"Will you come visit me to touch up my hair? I ask

"I can't "she answers "I dont know how to drive quite yet "

At this, we all burst into laughter

We are at a friends house . Her  mom - is expecting a second child in January

Last year she and her husband were considering having another child - She is older ( early 40's though she looks very young )

She told us that she almost decided not to - for fear that something could go wrong

But she said that by being with us she had realized that life could still be very good even when things don't go according to plan

It  is true

Our life is very good indeed .

Saturday  was a snow day.

We dont get a lot of snow here in TN. But we deeply enjoy what we do get

Snow is always pretty

But when you see it through R's eyes-  snow is  magic .

Our ordinary neighborhood is a land of enchantment

Everybody is inside their houses

The road is empty except for a dancing R

He points to the trampoline

The trampoline is covered in snow.

I patiently explain we can not

R persists

I tell him to use his words and he says  "Puck bee upp"( pick me up )

Unable to resist the spoken word - I pick him up and put him in the trampoline

"Kum Iside"( come inside) he beckons to me and though I have pulled my back this morning - I am unable to resist

And so we do

We jump on the trampoline, slipping and sliding

But somehow not falling

One of the things,  special needs mommies struggle most with,  is the thoughts around what might have been.

They imagine their child without the disability and with the struggles and it can break your heart.
Further, its easy to be around children like C - hear their adorable prattle - and to be filled with wistfulness

But there is a big  problem with that

That problem is that not only does it stop you from enjoying other children , but worse,  it blinds you to the beauty of the child you do have

As I am picking up R's babies--- doing my put-everything -in-place rituals of the night -(  Linny and Tuck and the unattractive but oddly adorable Backyardigans) - I think  of the world that R has opened up for me!

A world  where Turtles rescue Dinosaurs, and rocket ships with little children in them fly

Where my plebian neigbourhood is a wonderland just because of snow ,

Where our 18 dollar Walmart christmas tree with its tawdry jewels is a thing of promise
Where you jump on tramplines and swimming pools -come rain and snow

Where being in an airplane is a privilege

Where, I ,  myself have been reinvented

For when I look at myself through R's eyes I do not see an ordinary, weak person

I see a strong and  kind woman .. a person both deeply beloved and capable of extraordinary love

The big fallacy is that life after a special needs child is doomed

But  this life of mine  is proof that it can be full of joy -if you open your heart to the world that your child  will create for you

A special needs child ( or indeed any child ) can be your special purpose child .

"Nothing is good or bad .. its thinking that makes it so " says Shakespere.

"Shee Mother "( sleep with mother ) bargains R craftily from the bathtub

( his Dad usually puts him to bed but R is sulking due to being scolded for leaving the bathtub -streaking through the house wet  )

I get ready for his performance extraordinaire .

For R is able to produce tears on demand. I am not disappointed

After none of his tactics work - he holds my face and puts his nose to mine - looking into my eyes - assessing my resolve

"Shee mother" he coos - one last try - rubbing his velvety cheek on my face.

I hug the great fortune that being R's mother is to myself- revelling in the sheer delicousness of his ways- even as I tell him "Shee Pa" ( sleep with Papa)

"Dont worry about us " , I tell our acquantances with NT kids who see us as hardworking parents with the onerous task of taking care of a handicapped child " we are very happy "

Though they look unconvinced - unable to imagine that we mean it- its the truth

This child - this life - is no burden

This child and this life  is a gift

Why Children with Autism dont talk ?

“Is he saying anything yet”?

This is the invariable question that we used to get from R’s grandparents every time they called.

R’s grandparents have a very simple view of Autism (especially my mum and dad) .

They think R is a quirky kid (my side of the family is full of people with borderline aspergers so the spectrum of what passes for normal is pretty wide).

They see him as an intelligent child who basically cannot speak.

This is true to an extent but its not fully true

Especially if you think of the corollary – which is that they believe that speech will come (automatically) and that R will not need anything else once speech comes

Of course we have spent a lot of time thinking of speech.

This spring, DH and I said it out for the first time.

 I was doing my usual picking up before going to bed and we were getting ready for his IEP meeting.

You see, I was starting to feel that speech would never come.

But I could not bear to say it out aloud

But that day I said “What If he never talks .. Have you ever thought that could happen?”

DH sighed and said “Well we need to look into augmentative devices “

I sagged with relief.

Just saying it out loud felt like a weight had lifted off my shoulder

Its best to take the bull by the horn in most things and certainly that is the case with Autism issues

Fall has come and my fear is slowly ebbing

Speech had many hurdles for R. There were lots of gates that had to open before speech could come.

While I am no expert in Autism – we did spend a lot of our waking hours working on speech and thinking about it

I know this was the biggest question in my head in the months just before Autism.

I am writing this all down in the hope that it may help someone else( its long and its kind of boring and most of the autie mum and dad readers of this blog know this already. Also I am sitting in a plane with plenty of time to pontificate  )


Gate One

Auties think in pictures not words.

Imagine thinking of everything – only by the thing itself and never by the way it sounds ( which is the spoken word )

Symbolism is a critical step that is missing for many Auties – If you think about it all words are symbols – so the way the word "coffee”sounds – is a symbol for coffee

I know in our case some rudimentary pretend play( which also uses symbols ) has come along with speech

They way to cross Gate one was of course to skip the sign and skip the word – but communicate mostly with the use of PECS ( Picture Exchange System)

While PECS are a symbol – they are a much more direct symbol than the spoken word


Gate Two

Lack of Joint attention and Social Engagement and Referencing

Due to a variety of reasons ( overwhelmed by all sensory overload or under-load ), auties are paying attention to other things in their environment - not just the people – the humming of the fan , its circular motion etc

NT babies on the other hand spend all their time focused on their caregivers

Watching the mouths of the people moving .

Watching for the sounds in the environment from these people.

NT babies are learning about language constantly from the minute they are born becaue they are programmed to do so.

Just try this on your drive home today - look out the side of your car to the car in the lane next to you.

Almost every time the driver will turn and look at you. ( if not you can diagnose autism right there on the spot - just kidding LOL)

Because Neurotypicals are constantly in a state of social referencing



Gate 3

Inability to imitate

Much of early learning is done through copying .

In fact a theory says that some Auties are missing mirror neurons.

(Mirror neurons help you feel the way somebody else if feeling even when they are doing an action that you are not doing – Example how our mouth waters when you see someone else digging into a tasty meal even though we are not eating l)

I remember a key moment when I noticed that R reacted a little differently – we were driving back from DC last Fall- my MIL and SIL were with un in our Minivan

My SIL yawned and of course the rest of us started yawning

The only one who did not was R


Gate 4

Understanding the purpose of communication

Many auties do not understand that they can ask for something in order to receive it

Even in their early days - many of them have not spend countless hours in the back and forth response with their caregiver

NT babies who spend a lot of their baby hours doing just this and understanding the reciprocity of human interaction – cause and effect

Give a smile to get a smile

The ways to open Gate 2 and 3 and 4 is of course one on one engagement with the caregiver – especially something like Floortime/Sonrise /RDI - to use what motivates them in order to create these buliding blocks of development



Gate 5

This is our special cross to bear – Apraxia .

Fortunately, not all Auties have this problem

This is where the person is unable to make their mouth move the way they want it too

Its proved to be one of the hardest challenges our child has to deal with

However - this gate too - is opening slooooooowly but surely

We are using the Nancy Kaufman principle of using word approximations.

Even making sentences where each word is an approximation – and now that I am noting and recording – I find that R has a fairly decent vocabulary (very behind for his age but much ahead of what I expected )

Gate 6 and so on

Many barriers still remain of course. There is so much practice in language and comprehension  that auties miss.

 Plus even while the building blocks of joint attention and engagement are being created - they need to be strengthened almost continuously.

Because the call of the rest-of-the-stuff their sensory system is seeking is loud and insistent!

R’s apraxia is brutal and even as we are overcoming it I am aware that there are countless hours of language practice that R has missed and is missing- as we speak


But we are definitely on our way

This really is such a long post

But maybe a parent with a newly diagnosed child will read this

And know that the road to language has many barriers but these barrier can be overcome

The way to overcoming them is to observe your child, identify the barriers and then systematically overcome them.

To never simply wait for a miracle to unfold.

This Spring we were afraid that R would never talk

But by Fall – in spite of the fact that all the odds were against R ever talking – I know he will

Now when his grandparents call

R uses the few words that he has – "Hai" he says in greeting and "Gud by" ( good bye ) he says in Farewell after listening to their doting adulation patiently

And each hard-earned word is music to our ears

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 doll but her  casual  compliment is music to me )

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