Thursday, July 21, 2011

What we did in the beginning of July

The 3 day weekend

Lovely July starts with a 3 day weekend which I am very excited about ‘

Some of our couple friends come over and its very nice

They comment on how much R talks now .

Indeed I need to constantly remind myself that his talking is such a great gift.

Just 2 years ago we wondered if he would ever talk

Intuitively he knows that I am going to leave for a 3 day business trip on Tuesday and is stuck to me constantly ( though I now theorize, that he is actually paying attention to when DH and I talk and so he knows I am leaving before I make a schedule)

In the evening I decide to take a walk and usually R wants to stay behind but this time he insists on coming with me

I love his company and tell him so.

I love love love talking with him

Many of my questions go unanswered, he only answers the ones that are interesting to him

In the trail around the cabin, someone has parked two cycles

R points to them and says excitedly “ride a bicycle”

I reply “ They are not ours “

R bargains “First walk, then bicycle

I reply "No bicycle, they are not ours , why do you want to cycle ?"

R replies “ Exercise

We stop several times to look at the setting sun from different angles

R says “yellow circle”, “red circle “( very true)

He looks at a cabin ( which is much smaller than ours but has the whimsical name “kiss the moon” and so we all like it a lot – this is in sharp contradiction to other cabins that have been titled. "kiss me goodnight” – too coy even for me . Allison’s dream – cool but only if you are Alison , Sand-al’s – where is the sand ?)

He says “ I want to live in Kiss the moon”

He smells leaves

And when I ask him why , he replies “ Leaves smell pretty

The child is so interesting .

One of my friends said that the greatest gift a parent can give to a child is to be interested in them, who they are

This is true ,

But sometimes I think this may also be the greatest gift you give yourself. 

As being truly interested in your child ( in fact in all your loved ones ) is a sure way to enjoy them.

Business Trip

I leave on my work trip and as is R’s usual behavior – he does not sleep the night before

DH and I have gone to bed late as we have to take care of a lot of things since I wont be home the next three evenings –

so we are none to happy when R is awake 12pm -3am  and then in a few hours its time to wake up and drop me to the airport

I hand R the schedule

Now that the time for me to leave is actually on us, R is fine.

He is like me, in that, he dreads unpleasant future events so much, that he experiences them much before they actually happens.

So when the event actually happens he is already halfway through it

While I am on my trip , we talk on Facetime on our Ipads for the first time ever and its lovely .

I LOVE technology – I sing songs to R and he demands I sing “Dancy dancy dance “.

 He keeps trying to get me to sing more songs though its time to leave and I am loath to end the call, so hungry I am for how he dances around the room giggling in excitement

Reading

We have been really working on comprehension skills with R .

Like many hyperlexic kid, R could read by himself at 3.

However being able to read does not mean, being able to comprehend

He is tutored for 2 hours everyday on this

He is getting so addicted to books.

He is as excited about going to the library as most children would be about going to a toy store

We discovered a new series of books. "My numbers books" by Jane Moncure.

These books are very childish . But that is where his level is and so they are perfect for him

He spreads them around and enjoys them tremendously , gloats over them in fact



He talks about the museums a lot ( yes the same museums in New York that he was so lackadaisical about).

With his therapist, - and then he wants to say something about the Statue of Liberty, but he is not able to articulate it properly.

So Gypsi  hands him a white board  and he draws this .. he went to see the Statue of Liberty with his Papa

I am so delighted with the picture , DH could literally use it as his passport picture ( almost)

Miss Gypsi shows him books and makes him describe pics

He is finally starting to get this and describes the emotions correctly ( rudimentary emotions )

Like in the following picture - the two characters have gone outside and are having fun playing in the rain - but the sun comes out and they are sad

R identifies correctly that they are sad becasue the rain has ended

Outside time  

Though its hot and sweaty outside, R loves to be outside these days

He also has taken to wandering around the front yard.

The other day he was off to visit Matt, his therapist's fiancee. His house has a lot of coke and sprite and clearly R think this makes Matt, king.And us, mere peasants.

One day he is pestering DH to take him to Kroger to "meet coke and sprite"

When DH tells him exasperatedly that he should just go by himself, R sets off ,

In a panic, we discover that he is not home and start the hunt

Luckily while he was off to Kroger , he is distracted by our neighbor's flowers and is busy playing with them

I and DH resolve to never joke about this kind of stuff with R, as he does not get irony

We discover interesting bugs



Friends visit

Have you ever met your online friends and though you are meeting for the first time  its like you have known each other forever

This weekend I met with one  my friends and her family  from my blogging life - it is SOOOO awesome

I have to laugh when I see the spread we have laid out for them.

Along with the homemade breads ( carbs are my thing ) , we have prepared bacon, ham and sausage

( pork is DH's thing- and he has not been discouraged in the least by recently taking R for his first movie - Charlotte's web- which is all about a little pig who is trying to not get slaughtered  )

Here she is - isn't she beautiful ?

We had to laugh at how alike our husbands look ( we have often joked how alike they are in temperament )

We have so much fun with their kids

Their daughter is so funny and charming - my friend tells me stories of her school that have us in splits

Their little daughter has a "boyfriend"

He is the Head honcho in his class

The reason for being the head honcho is that he has  the whole trifecta of amazing  qualities which are as follows  - 1. he can tie his shoe lace, 2. he can snap his fingers AND 3. he can whistle

The little girl has an admirer who is always bringing her presents- like toothbrushes and combs  ( which it is suspected that he steals from his sister )

R is SUPER stimmy - but we have made it a law to not keep "correcting him" when he does this as long as he is not ill mannered

Plus , for some reason he is stressed out. And  telling him to stop using his coping mechanism( however odd they may look )  makes no sense

When they leave, my friend jokes to her husband that I probably know more about him than he could imagine

DH asks me later - if all my online friends know a lot about him and if I complain.

"A little bit", I answer though honestly there is not much to complain about  "mostly I wish you were a neat freak and you gushed over me" ( for I am a praise junkie )

"Come on" - I add - "there must be things about me you dont like , something you wish I could change"

"Nothing," says my love

Nashville Trip

When R was really little, DH and R would come with me when I went on a business trip if we were at a drive able distance. We would just take a little therapy break

Now with school that is no longer possible - but since its the summer , DH and R come along with me to Nashville

Since I have traveled so much this summer, I am very grateful to not have the extra guilt of being away from R

The trip is very arduous, as in the facility I am having my meetings, the airconditioning is off and its 95 degree weather

We take a break to go to Starbucks - and guess what we see in the Parking Lot



( everyone walks away unscathed thank goodness )

While we are driving back, we find that R has lost one of his books ( which is a library book and we will probably have to pay 30 dollars or so in fines  ) in the Hilton , plus we have left my french-press mug which was a gift from DH and much prized by me

This one - how cool it was
DH and I bicker about exactly whose fault it was

According to him, its my fault, as I always bring too many things and also was texting him while he was packing which distracted him

According to me, I was right, because he should have looked under the beds as R spends so much time on the floor and he was doing the packing up

We bicker ( for we really no longer fight ) away.

And suddenly I see R trying to get my attention from the back seat - for he hates us bickering and is trying to distract me

"I love mama .. I love mama .. I love mama " he is chanting, with that eager expression on his face

Its true , life is not the breaths you take,

Its the moments that take your breath away

Thursday, July 14, 2011

Sleep and Autism

Before R was born,  I meticulously read up on all the latest parenting books

Especially the ones on sleep

For it seemed - sleep problems- is all that the new parents I knew, talked about

I read about sleep scheduling, about the importance to get your baby started on a proper routine

I read about "crying it out"

And how it was really good and kind in the long run to let them cry it out

That by leaving them to sleep by themselves, you are teaching them to be independant

This had made complete sense to be in the months when I was expecting R

But after R was born, I felt different

This little baby had been living inside of my body-  till just a few days ago - completely dependant on me -

While independance was important , it felt more important to make him feel secure

( Now, I reasoned, how would it make sense for a helpless infant when it made no sense for me, an adult -  After all how would I - an adult -  feel , if DH would leave me by myself to "sort my feelings out"/" teach me independance" when I was sad/crying )

And though we tried,  R  simply was not able to sleep by himself


(  I dont mean to criticize  the scheduling method - I know it works for many people. It was just not for us and I would realise this much much later  when I was to understand SPD and learn about the proprioceptive system and gravitational insecurity. Much later, I  would realise that R simply could not realise where he was in space, unless his body was touching another)

It seemed that the only way R would fall asleep or stay asleep was in one of our arms
 
So we decided to co sleep for just the first few days

 And the days turned into weeks
 And the weeks turned into months
 Our crib - an expensive gift from a friend - was never used .


And R slept in one of our arms each night

Slowly, in fact , we found ourselves to be full fledged attachment parents



I did not know it then , but it would eventually be 5 more years before R would sleep in a big boy bed by himself

Sleep has never come easy for R

For a good night's sleep , we have to do it all

The behavioral methods- consistent routines

The biological methods- soothing bathtime, dim lights, melatonin

The emotional methods - reading a story of his choice, saying bedtime prayers, snuggles and telling him each night how much I love being his mother

But he does sleep each night

And mostly he sleeps all night

I finish his bedtime a little while ago

We say our prayers of gratefulness

We say goodnight to the fifteen books that are on his shelf

We finish reading "Wild Cats" - R's favorite  bed time book for the past two months

I end the book with the line "The big eared cub sleeps safe and sound as it rests besides his mother"

R sighs with staisfaction.

Its his favorite line

I look at my own little eared cub with his arms around his neck and think about this other mother - the African lioness

How this mother in a small southern town in America ( me )  is essentially  doing the same bedtime routine as this lioness in Africa

When I look back on those early years - that time when we did not know what was autism, how greatly anxious R's basic personality was, the unusual sensory system he had and his inability to produce enough melatonin  -

Even in those years when we had such little information about our child


We still had enough wisdom-that each time we had to make a choice
We followed our instincts

We chose the ways that worked for R

This post has been written for the wonderful Danette's Best of Best Bloggers edition on Sleep

Tuesday, July 12, 2011

What we did in June when we werent in New York

While me and a couple of my colleagues were returning back to the hotel tonight after a long day of work , I was thinking of an email I got from an old friend about why I had not written in my blog for so many days
I replied to him that I have been too busy being "inlife" to be "online"

While that is true, I miss blogging terribly.

My posts provide me the great opportunity to go back and look back at how things were last year or the year before that

A greek philosopher said that those that journal get to expereince happiness twice - and this is true of this 21st century blogger typing on her Ipad, as it was true of that old greek dude scrolling on his papyrus

Once you start to blog - you realise that all the years you did not blog are gone
Sometimes I look at old college pictures ( thanks to facebook ) and I wonder -

who was I then?

What did I feel about things?

Was I happy? Did I know I was happy ?

Al those pre-blog years that I cannot relive -

For now those years are just re-interpreted through the eyes of a 36 year old woman, not seen through the eyes of a 18 year old

And this is why though its midnight and I am in a hotel room at the end of a day that began at 5 am, I am looking at my photos and facebook updates to gather up this month , before its lost

My phases as mother

I do not know if this is true for you - but I am not the same person all the time
I usually have three phases as an autie mum - this third phase I discovered in June

Incarnation one: The Active mum :

 I floortime with dedication everyday.I read a lot about autism . I look for new methods. (In my recent phase of this I actively researched The Son Rise Program.)

Incarnation two: The Guilty Mom :

I am burdened by a feeling of not doing enough. Either my workload is high, or I am traveling a lot or we have guests at home. I feel incredibly guilty and keep thinking about time and the scarcity of it in my life. (Sometimes I do not even have any distractions to blame)

Incarnation three : The Passive mum :
This phase is one that I saw recently this month . I do not think about therapy or autism. R is just my child and not my child with autism .

Though this phase has passed – I really enjoyed it.

I did not clock watch – felt happy lounging on the couch watching TV with Dh after work.

I did dinnertime, bed time and bathtime, cuddle time with R – without a THOUGHT to “building neural connection”. Or analyzing R in terms of Floortime levels or anything like that. ( I think this is how many Autie mums think )

In a TV show I was watching recently , an actress goes to live with the Amish.

She asks Amish woman with exasperation “don’t you ever get tired of never being able to want anything?”
The Amish woman replies “don’t you ever get tired of always wanting something?”

In June I had times when I felt like the Amish woman with regard to parenting .I did not want anything.

It was nice.

Is this the kind of mother I would be all the time  if R did not have autism ?

While I enjoyed Incarnation three very much( which would seem intuitive as it involves very little work) , I actually enjoy Incarnation one very much as well !

Even though being an active autism mum involves lots of hard work and thinking.

 I think its because I actually enjoy Floortime very much. I can literally see R blossoming when we “play with purpose” and as he expresses new ideas and thoughts it gives me an incredible window into his world.

Plus it makes me feel connected to him.

Not just in a heart connection – as mother and son.( thank goodness I always have this )

But in a mind connection – as mind to mind

It was interesting to discover Passive mum in me and even more interesting to discover that active mum is just as much  fun

Often in Autism-land, mothers wonder how we can have a chance at happiness – as we have to work so very hard.

The implication being that the presence of so much work will leave no room for happiness.

But I wonder sometimes if this hypothesis is true and if a life full of hard work can also be full of happiness

Picnic

DH and I decided this month that we would do more things outside the house.

So we decide to go on a picnic on the bank of a little stream we have by our cabin

To our great surprise – R is elated to go. "We are going on a picnic.. we are going to have a great time” he tells us

This unusual loquacity is explained later as R is reading a book with Miss Gypsi on picnic

I make a list of all the things to pack in a picnic basket and R helps me pack our basket .

We cross everything off the list and off we go

In accordance to the script we have a great time

We walk in the stream, look at frogs and butterflies


There is a storage unit nearby . Each unit is identified by a number which thrills R no end

Canoe trip

The Open Doors organization sets up a canoe trip which is also a lot of fun .

DH and I decide that we really need to get a little boat ( one in which R can stand as he is very eager to do this on our canoe and keeps pleading that he wants to go to Papa so that he can walk around the canoe )



We go swimming every weekend ( barring the one that we are in New York ) even though the water in the pool is chilly.

We have decided to do something outdoorsy everyday this summer

They say that one of the best treatements for ADHD is being outside
They say one important condition for neuroplasticity is aerobic exercise and we are taking full advantage oof the summer




Enjoying process without results

R HATES to color - DH and Miss Gypsi wisely deduce that its because he cannot color well

So DH get him a lot of paints and just leave them hanging about for many days - he loves looking at all the bottles

Then one day he asks me himself to open a bottle

And last night I ask him if he wants to come with me for a walk or play on his computer and eat trail mix ( this latter is his favorite thing ). But to my joy he says

"But I want to paint"

He is producing no Picassos - I can tell you

However he is enjoying painting which is the whole point


Asking for something 

R almost never asks to buy something - but this one time we are at Marshalls - and he INSISTS on getting red shoes and he really preens in them saying " my new red shoes"

How adorable is that



Scripts as the scaffolding of language


R is using a lot of scripts these days. Some professionals believe that scripts should be discouraged

But we actively encourage scripts. ( thanks to some great advice from Dr Nancy Kauffman)

 Scripts are the scaffolding of language. Especially for children like R who have many thoughts and not many ways to express them

Plus his scripts are very very appropriate

The other day when I am scolding him for going on the road he sobs through his tears "Dont worry Blue "( as he is clearly worried )

He uses his ABA apps ( kindergarten.com)  on the Iphone a lot as well . He is forever making little observations about the world around.

If he has a cut on a hand - he will show it to me and inform me piously of my duties "you put a band aid on a hurt"

Joint attention is just an amazingly blossoming skill

Sometimes his observations are very very apt.

But sometimes they are very funny – The other day while I am making tea in a saucepan, R points to the pan and says “that is a frying pan” .

I lift him up to show him what's inside ( tea) and ask what's inside

"Bacon" he replies
For instance the other day I am talking to my MIL – who expresses her worries on R’s future .

I tell her how Dh and I always approach just the next step and no further and that I don’t know what he will be but we have a lot of faith in him

I have to laugh when R who has been on the Ipad and not appearing to pay any attention at all to what I am saying

He takes my hand and belts out a Blues Clues Song “ you can be anything that you want to be

And he is right

Tuesday, July 5, 2011

The importance of being kind ... to yourself

I am on Hopeful Parents today talking about the importance of being kind to yourself


If you have a minute, do visit that lovely website


If you hate to click links here is the post

On being kind .. to yourself

There are some of lovely things that have come to me, as I growing into my role as a special needs mum
( For as a special needs mum, I am a mere 4 years old,still learning my way )

One of these lovely things, is finally learning to look at myself with kinder eyes

All the books for autie mums and dads, tell you that more is better

That you can never do enough

And so you start to look at yourself and your days with all the things that you could not do

And all the things that you could not be

But, this is starting to change for me

I finish bedtime with R’s current favorite story “Wild cats “

I read out the final line

“And the big eared cub is safe and sound as it rests besides its mother”

And, while my own small eared cub, rests besides me, I assess the day in my mind

But, deliberately today, I count not the hours, spend in things I didn’t

( cooking, laundry , making a brunch for some friends –everyday chores that autie mums/dads are supposed to feel guilty about, as its time away from the all important parent therapizing )

Instead, I count, all the things I did

Negotiating on the importance of keeping the band-aid on , blowing bubbles, singing many songs, taking the “Little einsteins” for a jaunt down the mountain,

And all the loving (for this is may be my great talent as a mother )

And the day feels well spend

“Ring the bells that still can ring


Forget your perfect offering


There is a crack in everything


That’s how the light gets in”

Leonard Cohen

Friday, July 1, 2011

What we did in June: The Great New York Trip

The Great New York trip
 
I had a conference in New York city and since school is out for R , DH and R decide to come along with me .

We come in a day early and are staying in Times Square .

R does beautifully in the flight

I have brought along a whole folder of activities for R to do. But he is finished with them in the first 30 minutes

"Dot to dot" art Is a breeze for him!Coloring he does not much care for

Little ( like really little - Nick JR 3-word type) crosswords are really really easy for him..

This is something he would not even look at last year and I am delighted !!

The last time I stayed in times square, many years ago ,

I stayed at the Radisson . I still remember the tiny dingy room that smelled of years of cigarette smoke with some horror

However the Marriott Marquis on Times Square where we are staying  is amazing . The lady at the front desk is very very nice and gives us a room on the 43rd floor


The child loves hotels and he is very happy when we reach our room using an amazing transparent elevator\and spends a lot of time looking down



Metropolitan Museum of Art

I am very excited about going to the museum as I have never seen a real van gogh, Monet or Renoir

We walk through Central park .. R astride on DH's shoulders.


I point out all the places that I think I am certain  I have seen murders in various law and order episodes ( most people here are exercising - though my impression through TV is that this is a favorite hunting ground of criminals - and that meeting one's end should be the expected outcome)

R is very whiny though and keeps on asking about going back to the hotel.

At the museum R is barely interested in the amazing paintings on the wall.

I am bitterly disappointed at his lack of interest as at home stares at his posters of these paintings with rapt attention .



( however DH explains later that he probably does not know the difference between his poster prints and the actual paintings .. And to his logical mind .. It may be us who are strange for making a big fuss over these pictures that we actually have at home )

Finally one of the guards tells us that he cannot carry his empty coke and  sprite can . He sits and cries and cries .

( the guard is a little rude too which is upsetting to me . Though perhaps , I only find him rude  and cold as I am very spoiled by living in a small southern town- where people are gentle and charming and always act as though they have all the time in the world ) .

The beauty  of the museum is ruined for me though DH is sweet and tells me to "take a round" while he sits with R


I  wish I was alone with DH and I feel guilty at the thought . I remind myself that when r is all grown up I will miss being with him so much

It seems to me that mothers of small children miss having any "me time" and then empty Nester's miss having any "we time".

And the trick is to remember what we have and enjoy what is good in it..

Knowing we won't always have it.

I think one of the worst things must be to look back on life and remember how happy one was and how one did not know it then.

We eat a very nice dinner at an Italian restaurant..(DH  and I are fascinated with Italians owing to all the Italian culture we have been seeing through the sopranos.)

 R behaves impeccably and eats a whole pizza to our surprise

The next day goes much better ..

Its not that R is much different, but that i have adjusted
( is this not true of much of life? ) .

I have made a schedule .

We have allowed for plenty of in between time .

Lunch is a McDonald's . Our expectations are reset.

I have already anticipated that the Museum of Natural history will be disappointing as R has been calling the museum "dinosaur zoo" and I know the paltry skeletons will be a let down.

 I and DH enjoy ourselves hugely
R is largely unimpressed



He sits next to this majestic skeleton with a nonchalant look - playing with his 1 dollar foam numbers !!


This place is just made for kids and I enjoy digging for dinosaur bones with R ( I think I enjoy it more :-) )



We go to the empire state building in the afternoon.


Great view but SUPER crowded - Love the flower gardens on the terraces





The other two days, I am at the conference and DH and R go to see the statue of liberty and have a great time at the toys r us on times square



Toys r us surprisingly is where R has an absolute blast


Somehow its the ordinary things along with all the museums and landmarks that make NewYork so amazing

Like Street art for instance

 The naked cowboy and cow girl etc ( which I dont think I got pictures of )

We loved the cordoned off streets - all the colors of skin and accents around us . Manhattan is a microcosm of the world
At one point I actually see a sign "DOSA" which is a specialized Indian Pancake

We have a lovely time on Times square with the Jumbotron which to R's delight has many ads for Coke and Sprite


The food is pretty amazing as well , though I must say Chicago style Pizza is much more my style and New York stye Pizza just seems so unsumptous in comparison ( no doubt its much much healthier though )

Everything they say about New York Bagels and New york Coffee is true

New York is amazing , though DH and I decide that we probably will not come back here with R until he is 10 or 15

I dont regret it though .

Everything we do, cannot be for our role as parents or to provide an educational experience for R

Though R  and helping him develop is the most important thing in our lives, there has to room in this life for me, for DH and for us as a couple

Floortime Lite Mama

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