An ordinary week

Do you know who enjoys reading this blog the most?

Its me

Just by writing down my days, I feel like I can go back to them later and enjoy the awesome bits

And so for that reason I am chronicling the ordinary bits of our daily lives - DH , R and I

This week I have been incredibly busy -

My team and I had deadlines and presentation everyday

There has been so much going on and yet every evening by not simply being mindless. I have managed to quite enjoy myself

Saturday

We decide to go to Ikea - We must be the only people who literally go to IKEA so that they can eat in their crappy restaurant

R for some reason LOVES their chicken

When you have a child that eats fear factor style - its such a treat to see them gobble something down

Plus he also loves their play area

Unfortunately he exceeds their requirement to go to the ballpit - but fortunately he has reached the stage where we can reason with him

The mega tantrums that were part of summer  have gone and they were a result of the stress that we all were under

We go to Sams Club - as its close by so we can get our Christmas cards

OMG its so rainy and windy

Our umbrellas that DH was so smug about ( that he has spare ones in his car- unlike in my car where there are none  ) are no use as they turn upside down and try to make us fly in the sky !!!

We get our holiday cards and I would like to wish you a very merry Christmas and a happy new year

Sunday

We have a team meeting

Its finny to be sitting around the same table that we used to sit around with this team

I am so glad we finally have a team in place again - we really like all three of them very much

They are smart and sweet and positive

One of them even has a child with ASD which you can imagine is a huge advantage as a therapist to have that intuitive understanding

Monday

After his morning snuggles

R- suddenly burst into tears - I asked him why

I gave him my phone to type -- he typed in "the baby is crying because" then he erased it and wrote that "the boy is crying .."

I am happy that he changed "baby" to "boy" but I still don't understand why he would could not complete the sentence

Why is it so hard for him to explain what he is feeling in words ?

Usually we offer him multiple choice options but I want to stop doing that - as I always wonder if I am putting words in his mouth

I am very depressed at the CT stuff and have been trying to avoid the news

Someone sends me this article though and this line about one child who died who had autism breaks my heart

Dylan Hockley, 6, was found wrapped in the arms of Ann Marie Murphy, 52, who pulled the boy close to her as she tried to shield him from the spray of bullets that killed them both. 
"We take great comfort in knowing that Dylan was not alone when he died,"

There is also  story about a terrible assault on a woman in Delhi that is making the rounds.


Plus in each of these cases, everybody is jumping on their favorite sandbox ( guns, videogames etc in the case of the former ) and some articles on how women should act and dress in order to prevent being assaulted - that are making me so sad :-(


Sometimes the world makes no sense at all


Tuesday

I get my new Microsoft Surface - it is FANTASTIC and I am in love with it

I used to have an IPAD and there is really no going back to it -

The kickstand and keyboard are major points in its favor

And the fact that it has Word, Excel , One note etc makes it kind of more than a tablet

( though I cannot type on the touch keyboard and DH and I later in the week go to the Microsoft store at the Bellevue mall to get the type keyboard )

Plus you can attach a mouse to it ( as it has a USB port)

I am blogging for it right now and it feels light and beautiful and effortless

Its main cons are that

1. IE is slower,
2. I really needed the type keyboard,
3. I wish there was a proper mail client- something seriously awesome like the outlook that comes with office

 But that is about it -I have to remember to compare it with an Ipad or a Android Tablet ( both of which we have )

And the Microsoft Surface beats them hands down

For all the things that I use a tablet for - blogging, doing some office work , facebooking, reading books - it really could not be more perfect


Also it comes with  Office

I spend the evening fawning on it )

Wednesday

When I come home I am so dead tired - I take a bath and get into my nightgown and wooly-mammoth robe

DH and R are out at his OT ( we LOVE his new OT )

She has given him a Christmas present - which he smells clearly - its so interesting as how he tries to get a clue is inside!

 he likes it quite a bit - its a microwaveable bear ( I have to say the being able to cuddle up with a warm bear is awesome ...but the sight of the bear going round and round in the microwave - makes me feel a little creepy)

Thursday

When you are out of ideas, there are always bubble baths and balloons and swing

Sensory is the refuge of the lazy floortimer.

But my standards have been sooo low these past 6 months with so much going on in our lives with all the changes that even sensory is a baby step in the right direction

R's tummy is not good and we are kind of worried- we are going to explore allergies once again   - he is  quite a thin  child and any little illness gets each rib showing

Friday

All my deadlines for this week are behind me and they have been all gone well

Most of my colleagues are out and so I have very few emails

The sun is out and I go up to the window area to work

This is what I can look at  if I sit there

Even though its been cloudy for months - its so stunning today it almost makes up for it

I am so ridiculously relaxed and stress free today  - it feel like the best most awesme most relaxed day of the past 6 months

We will be back to madness in 10 more days but this is joy

I go home and we play with R's train that DH has set up - I try some real Floortime

 You guys the going is so hard

He gets me to get the scrabble board game down from the high shelf

I try an interactive game and of course its such a hard going -

I remember when DH was doing Hanen ( YEARS ago ) the therapist had done a home visit and come and showed us how we should write down the number of turns we are going to take with R - - and cross out each turn as we go past it

My dear reader- I am sometimes taken aback as to how R keeps making progress on so many things and none at all in some others

Anyway I use that technique today and with much whining we get a few turns around

The word knowledge is not the problem at all as you can see - so he gets that he can convert a word like "MAD" ( mine ) to "MADE " but he wont do it without a major whine fest

Saturday

I am still so relaxed - its bizzare how little email I have got today

We wake up late -lounge around in bed reading, snuggling with R - all of us on our respective tablets and devices

We have a  super late brunch -

R thankfully eats  good meal of veggies and I am so grateful for that

R's social skills class is at 1.30 but we barely make it ,so unwound are we all

Its in the library and its for two hours so DH and I go off to the Mall where we browse, get the keyboard  for Surface and DH points out Steve Ballmer at the Microsoft store

OMG I am so excited

As we leave, I ask one of the employees if he knows Ballmer is here - and he says ( very cool and relaxed and not at all swooning )  that Steve B is here a lot and that just the other day both Bill Gates and Steve B were there

DH and I share a frozen yogurt

( mostly me as DH does not believe in Frozen yogurt - ie he believes in its existence - but he feels that Frozen yogurt is pretending to be icecream and this hypocrisy along with other fake things like fat - free cream and turkey bacon are things that he has strong principles about )  and

The library has this AMAZING quaint old tyme display for Christmas that I am entranced by

oh how I adore dollhouses

This sign in the display makes me laugh out loud

R's old  therapists have had a team meetings with another child and they text me a picture of them
They are as nostalgic for us as we are for them

We text back a picture  of me and R saying "we love u " and we are all too mushy for words

This dear reader was a week in my life

I am writing this post sitting in bed with  glass of sparkling water and I am wondering where you are reading it from

I am struck by the magic of  the online world .

Good night  dear reader
 

The end of November

Thanksgiving

We have a 4 day break and a very welcome one it is

We have been walking -to-do lists  for  a while and it feels just wonderful  to do nothing for a little bit !

We asked R what he wants to do on Thanksgiving and he says he wants a picnic

OMG it is blissful - even though it is cold

We ask R what he wants to put in the picnic basket and he wants to put Coke and Sprite

And so we do

We do not however realize that he wants to mix his drinks !!

We do Black Friday Shopping on Friday and its a disaster - both DH and I are very grumpy and at one point we are planning to drive to another store and DH just cannot take it any more and he simply drives off..
And I am so glad he does - I hate shopping

R is his version of grumpy which involves incessant whining

He wants to have a "collection " of Wii Games - and while we are fine with buying him the games -we are NOT okay with buying the same game multiple times

But R wants a collection and we do not give in

I think the ideal conditions for us to be happy are as follows

1. to have plenty of time and not feel rushed
2. to be just the three of us or only close friends
3.  to be well fed
4. For R to be happy

I have noticed how much pleasure R's happiness gives to us  - perhaps its true of all kids

SOCIAL SKILLS 

DH and I are definitely going to gird our loins and learn about teaching social skills and put a plan in place for summer

When our friends are over - R just completely ignores the kids and these are VERY nice kids

Sweet and gentle

One of my friends daughters' tells her mother that she does not like to come to our house because she thinks that R does not like her!

This breaks my heart as I really adore her -

Here is she and her little brother - they entertain each other and play in the hammocks and swings that are plentiful in our cabin

Another weekend we have another set of friends and their kids - who are also beyond AWESOME

Tell me have you seen more beautiful kids ?

Again R ignores the amazing kids

While as always being sweet to the adults - here is R nestled to my friend

DH and I sternly remind ourselves that we need to attack social skills next

Especially reading stories of many autistic adults ( who I learn a lot from ) makes me feel guilty.

These adults talk about how they  just wanted to be "left alone" by other children when they were young,.

But they  feel their lack of friends and loneliness as they grow up .

This  is one thing we cannot ignore

( I must admit that the weight of all the things "we cannot ignore" weighs heavily on me some times )

The kids have demanded a classical Indian meal that DH and I make painstakingly

DH is a bit of a food snob and is ALARMED by the plebeian  way in which I am cooking

He grabs the jar from me and tells me to "respect the  saffron"

Not only must I use the right ingredients - apparently its also essential to coddle each ingredient

I leave DH to make out with the spices and do the rest of the things suitable to my "pedestrian abilities  ( grunt work like vaccuming )

The meal is DELICIOUS and the kids beg for seconds ( and everyone complements me on the sparkling house )

So both DH's bourgeoisie skills and my plebeian ones are well appreciated !!

Reading 

I am reading a lot these days

One interesting thing that I noticed was how the experience of a book changes with time.

I re-read Wuthering Heights recently . I used to say it was my favorite book - but I was shocked by how illogical the characters were. I wanted to yell at Heathcliff ( that same person that  17 year old me thought was very romantic )

I think its the same with life .

We can say we will never do this and  we will always do that

But we dont know how we will feel about this or that when we are at that point in time .

A woman once wrote about her mother that her mother used to always say that she will never become shapeless like old people do. When this woman was burying her mother - she noted how her mother had managed to stay shapely. I am alwasy struck by the people who manage to stick to something for their whole life . I feel I keep changing

The other thing I realized is just how much I read . I started to write short posts about books I am reading in a separate blog here 

I noticed that I read more than 10 books in the month of November.

This really has been made possible by Audio books that I listen to while doing chores

I have  the typical poverty of time, but I do  have time while doing other things and also I have little bursts of 10 minutes here and there

I have been thinking also that this approach could apply to Floortime as well

SICKIES 

DH and  I have both had little bouts of sickies.

I am always struck by the kindness of R - he tries to stay close to the one who is not feeling well

Last night when DH was not feeling well, R stayed snuggled up to DH all evening ( his usual place is to stay stuck to me )

His sweetness and goodness make my heart constrict sometime

This month's Nature magazine is devoted to Autism - its super expensive but I was lucky enough to have a friend who lend me her copy.

i will summarize the many good articles in that magazine - so you can read them too

(One of the articles talk about  prenatal screening for autism .This breaks my heart - it really does. But let me not dwell on that here )

As I peel a reluctant R from DH's arms to get him ready for bed I tell DH that we really won the kid lottery.

We really did, says DH

The Last days of Fall

Birthday Party 

For R we stopped having birthday parties after the age of 2 .

We started to do little parties at school - with is special needs class

This year though DH really wanted to have a proper birthday party and so we  decided to have a birthday party with some families

It was really low key and relaxed

R seemed to like the fuss - loved cutting the birthday cake, getting the presents, having all the amazing helium balloons that DH got for him

This is one of our new traditions - the cake shaped in the shape of the number he is

Most of the time he would leave the party and go to his bedroom

However when we asked him if he wanted a birthday party again next year - he said that he did !

I think that counts for something

A trip 

I had a conference and DH and R came along for the weekend - R had a wonderful time in the hotel which had 7 swimming pools

Have I told you how much R loves hotels ?

So when he talks about Christmas last year he always talks about Christmas at the "Double Tree by Hilton "

BUT NEVER SAYS THAT WE WERE ACTUALLY AT THE DISNEY MAGIC KINGDOM ON CHRISTMAS EVE.

Such is the unique perspective of R !

And it makes me smile

Disney Boardwalk 

We go to the Disney Boardwalk on his actual birthday . Fabulous weather ..

Its just the kind of place that R loves

Lots of space to run around

Pizza on the water front where the ducks come to eat his leftover

Lots of lights

Dinner with R 


I take R out for dinner by myself a few times so DH can be by himself

 I cannot tell you how awesome it is and how different from years past - R reads books , colors and this year I noticed he even likes to take bread out of the bead basket

There was a time when DH and I just stopped going to restauants with R and I am glad we did that and just waited till he was ready

I think the autism parenting version of the serenity prayer  should be as follows

"God grant me the serenity to know what I need to teach now ;
and what I need to wait to teach till he is ready;
and wisdom to know the difference"

Sea world 


DH takes R to Sea world 


I text DH to ask him how its going and my heart sinks when DH texts m back saying that he was "All done" within 30 minutes and it was another 100 bucks down the drain

I sooo want R to have fun

But they also go the next day  and shamu is all R wants to talk about

The end of Fall 


We are at the cabin and the last leaves are falling around me

I have been filled with  a  general melancholy these days .

Work is stressful and I am not able to turn my work self off  when I get home.

DH always keeps reminding me to "leave it in the office" but its hard for me to do

Also I just hate the way time is passing by .

Why must it go by so fast ?

I am  astounded by the weight of  the maintenance tasks of life .

Nothing has changed really - working+ Autism + home is a solid workload-

What has changed these past few weeks -   is how I feel  about it

My friend Tanya  said  that she has been feeling the "impermanence of life" right along with the "permanence of Autism" and I really know what she means

I think of what R said when I told him that tomorrow he would be 7 years old.

He said " 6 years old is all done "

I felt tears pricking me eyes , but R wasnt sad

I know he is thinking about what year 7 will bring .

And that is the way to think

Fall in the Mountains

October gave a party; 

The leaves by hundreds came -

 The Chestnuts, Oaks, and Maples, 

And leaves of every name. 

The Sunshine spread a carpet,

 And everything was grand, 

Miss Weather led the dancing, 

Professor Wind the band

                                  -George cooper

My dear readers - you often hear me wax eloquent of all things Fall .

And this fall is no different

 In the mountains, it makes you want to kiss the ground

This

is  slowly turning into this .

We are blanketed in red and  gold

DH and I love to take walks and we force R to come along .

R tries his best  to outline his ambitious plans of doing Wii FIt and eating Doritos, but we insist he come with us
He starts off flouncing along in a sulk

But soon he is having such a great time that he is racing along going eeeeeeee

I am so happy to be out with two of my favorite people.

We try hard to pose for pictures

Do you find it easy to get your kids to pose for a picture?

This child would much rather kiss his mother

 Or hug me  tight

Than look at the camera

When he does look at the camera we get these mealy mouthed expressions

 I give up after several tries  and pose just by myself

And then later when I download the pictures I think - R is the wiser

For surely, its better to show your love to the object of your affection than to put your love on show for someone else

Goodbye to Miss E

One of our beloved therapists is leaving - E worked with R from October 2007 to October 2010 - seeing him 4 times every week

She had a baby last november and was no longer able to see R

Finally after a year she is moving to another town

She comes to say goodbye and R is really really weird with her - ignoring her and looking quite indifferent

I am mortified because E has done SO much for us

Her daughter is really adorable and tries to get R's attention several times ( but to no avail )

But after she leaves, he cries his eyes out

Finally , he cries himself to sleep

Later on the couch I see he has snuggled up to the 3 letters S-A-D and my heart breaks for him

I always think of the way people think that auties may not feel much,

R's problem is that he feels too much.

IEP meeting 

We have a nice IEP meeting.

There are not too many services available in our school district but there are good and nice people

They are for the most part nice and sweet and they care about the kids. 

His sped teacher is very very knowledgeable about Autism and his mainstream teacher is a kind and sweet and intelligent woman
One of the teachers - his OT actually started to cry at one point in time - saying how much R touched her!

Currently he is being integrated in mainstream for half the day and in resource room for the other half

They also at the end of the meeting thanked us !!

One of them said that  they are so used to being criticized all the time - that they were very grateful to actually have someone be appreciative of them

It really makes a HUGE difference to us that R is accepted in school and I said several prayers of gratitude when I see that for the most part in elementary school all the special needs kiddos are treated with gentleness

Outside time 

We spend a lot of time outside.

The weeks at work are extremely draining and my insomnia is back. ( my mum is not very well and that contributes to my worry )  but I revive each weekend

This summer has been a scorcher and so the cooler days are very welcome

DH has been very busy with his projects and makes many martyrlike statements to me ( about how hard some people are working in sharp contradiction to some other people )

Though he also accuses me of doing the same ( being an insufferable martyr when I work while he is lazing )

As he is walking down I rap on the window to blow a kiss at him  -and  he trips and falls

I come out sympathetically, looking particularly unbecoming in my fleece robe and say

" Were you blinded by my beauty"

DH smiles and tells me "you dont know your own powers"


Of such silliness is happiness made.

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

The beginning of April

Here are some of the things that happened in the busy busy month of April

Team meeting and change in home therapy program

One Sunday DH and I sat down to plan what we want changed – we took a big blank piece of paper on top of which we wrote " I WISH "

We made a list of all the things we wish for for R

We went over our lists and basically it boiled down to be able to communicate more

Specifically

1. We want him to answer questions
2. We want him to ask questions
3. We want him to be able to talk about a topic

So for example a therapy session could go like this

1. Look at a picture and describe it
2. Choose a book – read it and talk about it
3. Take a walk and describe things  you see
4. Go somewhere take pictures about that place and then talk about it  
5. Play with a toy scenario and talk about it

We want to continue with teaching him some specific social scripts . Some automatic social greetings. Some basic info about himself ( for safety reasons )

Our awesome therapists are all keen and willing to try this plan out –All of them have know R for atleast half his life and they all know that his needs are changing

In the middle of the meeting – R comes in – and looks around trying to find a place and observes sadly "no chair for R "

This is so cute that we fall over ourselves trying to get him a chair !

Once school is out we want to have a more intense ( more hours ) at home and want to take on some academic Ist grade stuff as well - the idea is to teach him how to do independent work – with work sheets etc
Independent work at school seems so daunting – yet I have to remind myself that 3 years ago he did not know what his name was

Play date

Some close friends of ours come and spend the weekend –

Spring is here and its all warm and wonderful this weekend

We have a marvelous time and talk late into the night

They have two daughters – one who was in fact born the same day as R

These daughters are just AMAZING – being just a year apart they are busy playing together all the time

The first morning they are here, R figures out that they are not bothering him at all – they don't interfere with his two main interests – the computer and the Wii

By evening HE is interested in playing with them and when we go to the park he insists on riding in the car

For dinner we go to Corky's ( yes a nice dinner out means Barbecue to us who have adopted Southern culture ) – while returning back to the cabin – R insists on riding in their car- this is a huge surprise and I don't know how he will do

When we reach back to the cabin – I tell Kelly how surprised I am and how he has never done this before – and she says she is very honored

She says he was totally fine and in the middle when Dave pointed out how we were driving in front – he suddenly started to laugh and then everybody else joined in though no one knew what the joke was
( this Iam familiar with as I have done it before – R starts to laugh at some secret joke and I though I have no idea what the joke is cannot stop laughing either )

Their daughter says she is the source of R's laughter as she was "constantly kicking his chair to keep him company ".

 Such are the simple ideas of companionship that small children have

The grown ups chat with glasses of wine and the kids all get stuck to their screens

When they leave we are very sad – though they give R their guitar since he was VERY enamored by it ( which is why now the boy has a bright pink guitar )

Floortime

Has continued to be weak

Sometimes I cannot find the energy to play , sometimes R is too exhausted –

sometimes we are playing but both of us are too tired and get stuck – For instance here R – we are playing with the Ferris wheel set of Little people – and R is stuck on the fact that the Santa doll is not sticking firmly to the seat.

Now the sensible thing would be to use that as a beginning point of a dialogue – but of course I do not!

I have been traveling a lot and R has had bad allergies .

All winter I spend yearning from for Spring and I forget completely about all the allergy issues

One night his eyes are so swollen – he cannot open them at all – he cries and cries( I am sure it must be so scary to suddenly become blind ) but of course it makes things worse– and I spend the rest of the night comforting him

Nowadays I find that I can no longer take leave home at 5.30 am and return at 11 pm with a full packed day ( which is what a day trip to Cincinnati/Chicago/Detroit looks like ) – though I still do it.

I am drained and exhausted all week and feel like I cannot catch up

R does quite with these day trips as long as he has a detailed schedule – DH is completely able to take care of him by himself ( Of course  R really is  easier to take care of than he used to be- there was a time when he had to be carried every minute of every day  )

Though – he gets so thrilled when he gets into our bed and finds me that he spends the rest of the night periodically at clutching at me in an paroxysm of fondness - which means we ae both very exhausted the next day

We are driving down to Georgia this weekend, to  resume sessions with our Floortime psychologist next weekend – and I am hoping that will re-energize me and get me back some mojo

Fun In spite of all this fatigue - its not that w are not having fun though

DH and I have discovered a new addiction – The Sopranos – and we are hooked !

On the surface this is a show about the mafia – but really it's a study of the human relationships and the human psyche and its contradictions

R also has discovered two new thrills

The first is a paid subscription to get to "more starfall" – R is just loving this website . He has been asking for it. I have been hesitant because there is already so much on you-tube.

However – there is this page which has a list of number – where only "1 " is clickable and does various antics - the rest of the numbers are grayed out .
This of course is to tease kids like R!

I finally go ahead and fork over the $35 and am immediately mother of the year

Another attraction ffor him are all the free apps ( free this month because of autism month ) from kndergarten .com that I have downloaded –

Excellent quality – especially since we are looking to get him to answer more questions – which is the format of many of their apps( what does not belong? what does what ?)

I have been listening to loads of books on I-pod myself – I am really enjoying the "Mr Monk' series –  I feel that Mr Monk has Asperger Syndrome

Besides these pleasures, there are few places on earth as beautiful as Tennessee in the Spring

and everywhere you turn there is much to feast on

Dogwoods and redbuds are in full bloom ( the background picture for the blog currently is from my neighborhood )

School

I know I have mentioned this before,  but R has a few very loud children in his class

( all the kids in his class are sweet and mean no harm – its just that the noise is hard for a child with issues with auditory defensiveness)

Anyway his fabulous teacher has written social stories – one of the stories is about a child X who has cerebral palsy

In the social story the teacher is trying to tell R that child X cannot run, walk or play like R and so he expresses himself in the way he can

All this is true but my heart breaks for X and X's mom and it makes me cry

I wonder if my friends with Neurotypical kids worry for me like this-

While X's mom takes it in her stride like I do

The last time I went too the dentist – in the Hygienists' office , I saw that there was a picture of a girl in a wheel chair – who I recognized from R's old school –

I asked about her  and I mentioned that my son was in that school when he was 3 due to Autism

She told me that he daughter had brain damage from her being in a car accident in her 7^th month of pregnancy and the fetus being deprived of oxygen

But she too referred to her daughter as her sunshine ( not unlike the way in which I call R the human Prozac)

I think there is something very unifying in the shared experience of parenting kiddos with special needs ( or maybe even just parenting )

And all my prayers that night are not for me and mine, but for X and his family

Sometimes its hard to make sense of the unfairness of life – especially where the suffering of little children is concerned

But even with all its unfairness, life can still be very beautiful

And parenting can have many many joys, no matter what difficulties we face. Perhapes this is the way we all feel about the parenting expereince no matter how difficult it looks from outside


"[He] gave me eyes...
[he] gave me ears;
And humble cares, and delicate fears;
A heart, the fountain of sweet tears;
And love, and thought, and joy."
- Wordsworth