Friday, July 31, 2009

How do they do it?

X  is sitting across me - we are waiting for a call from one of our suppliers
She is talking about how busy her evening today will be

"They are delivering a whole truckload of mulch today ... Y's ( her DH ) ankle is still in bad shape so guess who will be spreading the mulch ? me! ... And then I have to get the kids dinner and their school lunches packed for tomorrow?"

"Busy evening!!!" I sympathize. "I have nothing much tonite .. just play therapy for R ... I really need to get on top of things . Its so tempting to vegetate in front of the TV ?"

At the mention of my special needs world, X quickly blushes

( Its an interesting reaction I see, often from parents of normal kids - a sort of a survivor guilt )

" I dont know how you do it .. I really should not complain to you.. ... i just dont know how you do it"she says apologetically

I am thinking about what J is saying and wondering whether Autism has really made my life that much harder

Before R was born, I had little knowledge or interest in children.

As soon as I held R for the first time - everything changed

R is the only child we knew well and we learned how to parent him - from him.

Perhaps all parents do

When we were expecting him, one of the most fun things we did was to make a really cute nursery for him.

We used all the very whimsical "Humphrey's corner" design.

We read up on scheduleed feedings and scheduled sleep.

Discipline from the start is best, we would say.

This will not be a child-centered home, we said

But once we had him, we knew we would never be able to be strict with anything!

So the expensive crib remained untouched as we realised that the only time he slept peacefully and long was when he was touching us.

We will co-sleep for just the first few weeks we said.



Then we said, maybe just a few months more


Then we rationalized and said to ourselves
lets us wait a year ... just till he is a toddler then we shall tempt him with a cool toddler bed !!



So the nursery was never slept in ( and is now his therapy room.)

And R has stayed in one of our arms every night

Even this morning, 4 years later, as the alarm rang at 6, I lifted DH's hand and put it on R's back. Knowing that if he feels his Dad's hand he will sleep long and well

Not just while sleeping, but even during the day R always seemed happiest when he was physically touching us all the time

And so we kept him attached to us. pretending we were planning to be "attachment parents" all along.

I did houswork like a kangaroo with R in my Baby Bjorn Pouch



And I went for walks with him attached



R was always uncomfortable in crowded social situations.

My close friend's wife and I went into labor the same day and since our kiddos were the exact same age - we decided to have their first birthday together.

E was thrilled to be the center of attention but R was miserable.



As soon as he could, R toddled to a far corner and was only happy when he was alone with DH


I ended up opening all of R's presents and he showed no interest in them


In parties, through the years, we looked for calmer places



In picnics with friends- and we went on so many - he was much happier when he was able to get one on one time with one of us. Never alone but away from the crowd.



"I am starving - let me eat first - then I will take R and then you eat"

I would bargain with DH when we would go out for dinner

( Here I must mention that, R was never illmannered -Just uncomfortable and stimmy)

Right from the day he was born we have been parenting to R and his special needs ( in the way perhaps that all parents do - as dont all kids have special needs ? )

Interestingly , DH and I are quite exhausted by normal kids - we know nothing about how to parent them and are always wondering how these parents seem to answer incessant questions, interrupted conversations, shrewd negotiations so effortlessly -( perhaps all our kids are training us ?)


" There is nothing so special about what we do " I tell X

And its the truth.

For us there is only one child that we know how to be mum and dad to.

And that child is R.

That's how we do it

Monday, July 27, 2009

True Story Tuesday: My first introduction to Autism

For my first "true story Tuesday" I will share my introduction to Autism.
Its not outrageous or too amazing. But its true.

I was visiting my close friends' home in the South in the summer of 2001.
For some reason even though it was 8 years ago I can remember this day as though it was yesterday.
My friend had two couins with Autim - one 16 year old boy and one 6 year old girl.
One child ( the 16 year old boy)was living with his grandmother

Can I talk to him? I asked

Someone answered

" Just be careful.. he likes to collect paper ...he will be seriously upset if you have any paper with you or touch any paper of his"

He did not pay any attention to me even though I smiled at him several times and I was too afraid to say something.( he did not look scary at all BTW, its just that the way they had described him made him seem so different that I was scared with the fear of the unknown)


The next day we went to her Aunts house - a beautiful house on a side a lake.

Both the aunt and uncle were doctors and their daughter also was autistic.

As soon as I saw this little girl - I was struck by her charm.

She looked like a fairy and did not speak at all.

Her parents coaxed her to say "Hi" to me but she did not just gazing at me contemplatively.

I watched her fascinated.

After making small talk and trying (ineffectually) to help in the food preparation for the barbecue.( for all my friend and her family are an image of gracious Southern hospitality and lavish spreads are presented at each meal). After I realised that they were giving me little tasks - more to include me - than for the help I was providing - I gave up and sat in a chair

To my delight the little child came and sat in my lap and snuggled up to me

I was so happy to be singled out for the compliment- though her parents - conscientious as most Westerners are about personal space and not infringing on others - insisted she get up!

She never does this! they kept saying

Which of course made me feel all the more special.

I asked one of the people there what Autism was.

Autistic people have problems with the way they see things ...A book is a rectangle and a door is a rectangle and so they look the same

I puzzled on this for a long time trying to see the world from the little child's eyes ( though now of course I realize the description was not accurate at all )

I forgot about Autism for many years until I got to know it really really well 5 years later in the summer of 2006 when we wrestled with the questions of "Is it Autism or not?"

I still think of the little girl sometimes because R reminds me of her so much.

From the way his weight feels in my lap, to his charming wordless ways.

In the way people around him seem to feel privileged to get his hugs and kisses, to his direct gaze.

I got in touch with my dear friend again when I traveled to the on work to her city a year ago.

She said J is doing very well and is a very happy child.

I have hugged that sentence like a talisman this year

For another friends's introduction to autism. ( and this story gave me a thrill ) read my friend Lindsey's
"http://whyifailedmath.blogspot.com/2009/02/you-cant-say-i-didnt-warn-you.html"
For more fun with True Story Tuesday and participate yourself visit Rachel and Mr Daddy at
http://tris-adventures.blogspot.com/

Saturday, July 25, 2009

Being Present

At the conference in Chicago last week it is lunch time. The lunch has been set up as a buffet and I find myself with 4 strangers.

We are all 4 - WOHM and that too in the busy busy field of Consumer Research

We have just attended a presentation by Campbell Soup.The presenter has talked about how difficult the question " what's for dinner?" is for moms. Moms across their mommy-career will face and answer this question on an average more than 10, 000 times. This question basically involves 20 decisions on an average - like what is there in the pantry , how much time there is to cook, how long has it been since we last had this meal, what else needs to be done in the evening etc etc

We start talking - 4 strangers - about what mommyhood has meant for our workload.
One person quotes this article that says that if a person is asked -
"what gives you the most happiness - work or personal life?- you would always get the answer- personal life?"
But in the research he asks people to press the happy button throughout the day when they are happy and a gadget records their happy signals and co-relate them with what they are doing.

The findings of the research are surprising and suggest that in fact people are more happy at work!

One moms laugh and say that - "well at work one gets a lot of adult interaction and recognition for a job well done. And at home, sometimes it can feel like a thankless job"
Another mom adds "Well also at work when a project is over .. its over .. the work of being a mother is never really done .. cleaned houses get dirty, clothes out of the laundry will need to go through the cycle again so really - it never gets done"

One mom - an older mom- is silent.

She finally says after the rest of us are done speculating on the Happiness article and its causes

"I used to think like you ladies when I was younger, but now I wish I had done it different.Now that my kids are grown up - I so wish I had just been more present ... you know .. when they were tugging at my sleeve needing this or that .. I wish I had known what a compliment that was... if I could do it all over.. I would be more present"

She becomes silent as she realizes that she has broken the flow of the conversation.

A lot of conversations - at least most of the enjoyable ones are filled with agreement of points of view.

Many conversations are looking for empathy- a common point of connection

Most of us really are not looking to debate. Plus all conversation around mommyhood and work- and what is the right thing to do or the satisfying thing to do - is a minefield of guilt and we all have learned to tread gently around it.

But we dont want her to feel bad

And so we rush in to reassure her

"I need to do more of that"
"You are so right"
"I dont want to be saying coulda woulda shoulda 10 years from now"


I wonder if the others at the table will remember or not - the next evening that their child is beckoning while the laundry awaits

And then I also wonder if the woman with the grown up children really is right or not

Is the right moral of the story - forget about the day to day living things and play with your child ?

It sounds so good in a Hallmark Television Commercial kind of way

But I am not sure how true it is !

I know she means it but its one of those things that are meaningful in retrospect - when you have a scarcity of child time and surfeit of time to do chores

For I know in our own life which like so many others' is full to bursting - if DH and I dont plan out what we will wear and eat during the week or keep a reasonably clean home - there is chaos.

We really MUST make tradeoffs between life and the things we do for living - as my friend T calls it

But being FULLY present in what ever we are doing .

Not thinking about chores when with child

AND

Not feeling guilty about the child when doing chores

Folding laundry, cooking dinner, doing floortime, providing sensory play , watching movie, flirting with DH, experimenting with make-up, planning with therapists, cleaning house etc with ALL your heart.

Knowing each of these is an essential part of life

Fully present in each moment -

Now that sounds good

Tuesday, July 21, 2009

Chicago Trip W/O July 14 - Wed- Friday

Wednesday

We flew to chicago in the afternoon - R was a TOTAL angel in the flight - interested in looking below and giggling and leaning into me.
When we reached the hotel they were not ready to check in.So we went out and had lunch . I get REALLY grumpy when i am hungry (and also because of the diet )and so does R .

We went to an Italian bistro where everytihng was a grease-fest - I did find a three bean salad and R ate some pizza . Just before I got the pizza he was so tired that his face crumpled into tears.
My heart just breaks when he cries like that. Each time this happens I think how terrible it would be if I actually did not have food for my child.I plan to do more for "Second harvest" this year.
I go to the opening of the conference. A legend in research opens the conference.But he is a drag and speaks in cliches.

In the evening I walk back to the hotel with J -my collegue - we all go to dinner - we walk the streets of Downtown - we want to eat somewhere that is unique and Chicago-like. Also something that we would not get in my corner of the world - so we wander and wander hunting for food and finally settle in a place called "Feast" Their black bean burger is to die for !
But R is very tired - I snuggle him a little and he cheers up and then behaves beautifully throughout dinner ( he stims a little but we dont mind it)
From Chicago


J is very nice and says several times how wonderful R is. R of course has a fond feeling for her as she is the one who gave him a" byce"( bicycle) last week .

Thursday

The conference is all day. In the evening I come back an feed R his dinner. He has gone swimming in the hotel pool on the 23rd floor each day with DH. He has been an angel. DH has gone to meet a friend in the suburbs in the day and he has been in the train for 3 hours! But he loves the train and has not complained or whined.
When I leave for an hour or so to meet my friends-I bribe R with a Blue Raspberry Dum Dum -I tell him I will go out . But promise to be the one to give him a bath and put him to bed.


This evening I meet my two E -friends - its sooooo lovely to meet them.
They are also members of our exclusive sorority as my friend Kara calls them ( mums of Auties) I love them and I love their kids. One of them is a doctor -also here on a conference and another is local.I meet them for the first time but its like we know each other forever( which we do) - and we keep interrupting each other trying to fit in everything in the hour we have.


In the evening despite my strict instructions - Dh has NOT ordered oom service - he does not want hotel-food in Chicago and so we go out LATE in the night to "The Grill"- Its 11 but we take DH's computer so R can watch a DVD and he does in peace amidst coiling around me though its late . I eat the best grilled veggies I have ever had.

R has been such an angel through the past 2 days that DH and I ( who are country mice for sure ) wonder if R is really a town mouse who loves the night life.

Friday

The conference ends at 3 today and as our hotel and the conference location are on two ends of the Magnificent Mile - we start walking towards each other - we meet in a park and R does his happy jig- hopping with excitement. He ends his dance in his charming way by gently kissing my nose.
He hugs J and J is so touched and that R is not like any ASD kid she has met. This of course causes me to clamber on to my soapbox about how autistic kids are misunderstood and how they are all affectionate. Some just are unable to express their emotions in ordinary ways due to Sensory Issues.

We bid J goodbye - she is going to an airport hotel and we are staying in Downtown and will leave tomorrow
We loiter around the streets - R is entranced by the wide open concrete spaces and all the flowers - Really Chicago downtown is the best I have ever seen !

These are a few new attracions on the road

The big BEAN
From Chicago

The photo waterfall are simply gorgeous as is the terrific architecture
From Chicago


From Chicago


Its VERY cold so we all end up buying jackets.. Here R is wearing mine.
What a small fry he is !
From Chicago


The weather has been gorgeous these past two days but ut suddenly starts to rain
And we run inside a coffee shop - I have a cappucino - R has some chips and Sprite and we watch the great Downtwon crowds throng past
Its the best cappucino I have ever- why does everything taste so much better here?
And I have the pleasure of watching the surly large barista blush in pleasure when I tell him I have never had a better cappuccino in my life
One of my friends says that she is always strong aginst attacks, its the compliments that touch her and make her feel vulnerable.

And its so true


One of the things I have detested about this trip has been the constant hunting for food.

DH is determined to find interesting things to eat thingshewouldnotfindinTennessee and Chicago has this grand illusion that there is something exciting just around the corner
Of course all the exciting things have long wait times.

So we hunt for Sunda ( a vietnamese place ) When we find it eventually (after hours of walking) it turns out that it has a 90 minute wait. We eventually go to the Ranforest cafe - DH's never been and R is stunned into silence by the gorillas and the elephant.
He really cannot understand why we are eating nonchalantly while all this deadly wild life is burgeoning around us

From Chicago


Really we put him through so much change - but I believe its kind of good for him

Saturday

We loll around in the morning - R eats a massive slice of pizza- and we set off for the Hancock Observatory.
Its spectacular
The ticket lady is very sweet and though I tell her R is 4 and therefore I need a child ticket for 10 dollars - she says - 0-3 firmly to me and does not charge us. Though she is being kind, I feel horribly guilty and cling on to the feeling till we reach the top
And then on the 90th floor of this building all I can think of is beauty .. sheer spectacular beauty
I have no other words
Chicago is gorgeous from up above
Whether you look at the things that man has made
From Chicago

Or those that are a gift of nature
From Chicago

We eat at Jamba juice and go to the airport . At the airport right at the moment that we are in the midst of a major discussion checking our bags in - R has a major meltdown over a Blue Raspberry Dum Dum and wails UP UP UP he chants and dances like a angry dervish.
People watch us amused!
He has been so angelic - a tantrum is overdue - and I pick him up! And tell him he can have the Dum Dum but he cannot whine any more
He sleeps in the flight back home and while its lovely to be back - I am deeply tired

Sunday

Is a day of extreme drudgery to get ready for the week and I am feeling terribly nostalgic for Chicago

Sunday, July 19, 2009

Love Poems

I am one of the extremely directionally challenged

This week of my conference – our hotel is located two miles down the same road and I have decided to walk.

Its next to impossible to really diet in Chicago and I am hoping that miles of walking daily will take care of some of the dietary sins.

As its down the same road Michigan Avenue you would think the chances of my getting lost are slim

But I have still told DH to make a detailed map for my trip.

When I open the note, my eyes fill with tears as I realize that DH has marked each road on it – including the starting direction which says I need to turn Right out of the hotel lobby
From Chicago

How good he is to me !

Sometimes I tell DH I wish I could meet him all over again.

And it the truth – I do

I met him when I was 20. He asked me to marry him the first week and we have been together ever since.

Though we have our ups and downs- I can say our marriage is in the best place that its ever been.

Still… I miss the excitement of the first year of meeting.

The letters , the effusive compliments, the silly gifts, the surreptitious hand holding.

And most of all I miss the poems.

DH’s habit of writing sweet, flattering, unsophisticated poems that always rhymed

Somehow, down the years, he stopped writing them.

But as I look down at these painstaking directions that my love has written for me.

I see that he never stopped writing them

They just look different now.

Tuesday, July 14, 2009

W/o July 12- Friday – Tuesday

Friday

In the evening when DH took R to musical gymnastics, I put away the laundry and packed our bags as we are driving down to Nashville to stay with DH's BFF and her family. DH truly loves her and their friendship is so cute –as she as as sweet and southern as can be and my DH is just the opposite- all sarcasm and dry humor.

We love hanging out with them – her DH is great . The three of them drink Jack ( Daniels) while I sip water and we chat the evening away – we speak in whispers as they have a sweet little baby who wakes up at the slightest notice.

They have a very sweet ( in looks not nature ) dog who hates when people touch her and I wonder if dogs can have sensory integration disorder. She is also from a pound so who knows what treatment she got before she came to this house. R paradoxically is very interested in the dog . I always tell strangers to give him space and let R approach you and this is so true.

He lolls around on their pillows – in their living room and when its time to sleep he is very cranky

Saturday

R wakes up early – grumpy as a bear. I am constantly shushing him scared he will wake the baby up as this is a very loud house . Its large but full of echoes.

We get to the DAN doctor. I love this guy – but he tells us we are not out of the woods yet of the heavy metals though its great that his mercury is down. He says he would like to do a provocative test before we rule anything out. He also gently reminds us on the vitamins which we have been doing a crappy job of giving R.

He is thrilled to hear that R is doing well. I think all the professionals must also have so much performance anxiety.

We drive back from Nashville after stopping at the outlet mall to buy perfume for our family in India. My family loves perfume

Saturday night we go out to dinner at a friends' where I win ( with tremendously low competition and also by extensive cheating ) in corn hole. R stays home with his therapist and he is very happy to see her and fawns over her effusively.

Sunday

Even though the weekend was overscheduled I have not been able to pass up the opportunity for a play date and have invited a couple over for lunch ( we hung out with them yesterday at the BBQ and they are simply darling and when we were saying that R is not interested in peers and that is a big problem ) the promptly suggest a playdate tomorrow and invite us to their house. I ask them to come to ours instead as the wife is newly pregnant and I don't want her cleaning house and preparing for guests. I simply love this couple – really people are soo kind - and make an elaborate meal for them ( and also cook for the week ) in the AM .

What can I say about C – their little 3 year old – She is DARLING. I love her to bits but R is very uncomfortable and does everything to avoid her – giggling squirming. He frequently runs to his computer and shuts the door behind him

He cries a lot when I play with C and does not let C hold my hand. C is very astute for a 3 year old and her mom has prepped her so she does a great job of ignoring R's ignoring. We jump and swim and swing. One interesting thing I note is that while R is avoiding C tremendously – he also jealously does not want her to swing or get in the pool without him. He wants to do it too. I wonder whether he is possessive about his things or her.

Interestingly while R cannot play in the dollhouse at all – C is a queen – she is making the family go shopping, go to work etc . Clearly our friends kiss a lot- LOL. As the mom and dad dolls are always kissing each other in greeting

When C goes to the computer she picks it up fast but I am take aback to realize that she cannot read

It's really painful to watch him in a playdate – he is so uncomfortable and yet I keep hearing this is necessary.

Monday

The work day is CRAZY busy and R has 5 sessions ( 2 ABA + 1 Speech + 1 Cranial Massage + Music)

I do nothing except, make his pizza and feed him dinner bath etc . DH and I are so worn out – we watch 4 shows ( Leverage, MONK , Law and Order CI and Royal Pains ) and R plays on the computer

I am also doing laudry and packing for our trip ( this is the most efficient way of packing I find – simply wash the clothes of the past 3 days and you will have 3 days worth of clothes to pack ) . We leave tomorrow – work for me and R and DH are also coming along so I don't have to be without them. I am a little worried as to hoe It will go as I have a lot of work and my evenings wont be as free .But still atleast I wont miss them or feel guilty !

Its very relaxing

 

Sunday, July 12, 2009

Where to begin? …. At the end of course!

A week of too much work and too little time.

Little sleep and too many chores

We went last night to another town which is the closest DAN doctor – stayed at a dear friends' house and met R's DAN doctor this morning. Then we drove the 200 miles back and had to go to another good friend's dinner party!

And its midnight and I am trying to unwind after a lovely but frazzled day

I talk so much about "living in the moment" and yet in weeks like this it seems like my mind is always on my ever growing To- Do list

I am perpetually making mental notes

And yet the more mental notes I make, the more I seem to forget some small important thing ( like the Benadryl I forgot to take last night for our overnight trip though our friends have a dog and r seems slightly allergic to dander)

It seems to be that I must be missing some sort of organizational trick.

And yet of course – the truth is that- sometimes there really is no way to keep it all together

The plate is simply too full

Even now, as I sigh about having left R's Math game at the doctor's office in Nashville ( which means it will be 9 weeks before I get it again ) or the fact that I cannot find where his toothbrush is

I know there is only one thing to do

And that is- to let it slide

And forgive myself

Tonight as I wrapped up R in a towel at the end of his bath and cooed to him about how amazing he is.. while he nuzzled my neck..

I suddenly recaptured the feeling of loving life .

It made me think about how the plan for a day should not be simply a To-Do list of things to accomplish

The plan should be about how to live the day

And the feeling that you want at the end of it

What makes it a good day for me at the end of this day- perhaps at the end of all days- is to have lived that day with love, happiness, hard work, peace and purpose

Here is to starting the day with the happy ending in mind!

 

Tuesday, July 7, 2009

W/o July 3Weekly Round up : Saturday thru Thursday

Weekend

Over the weekend I talk to all the therapists about his ABA program needing to change. I want to make sure that its not just that I am over-reacting at his recent tears - we decide that the two most important things will be - 1. not to start with discrete trial, 2. to change the program
While Discrete trial is only supposed to be 10 minutes there are some things he literally has been doing for a year. He knows exactly what clap your hands etc is he sometimes does not do it because he is bored and at other times becase his Global Apraxia prevents him from doing it
All the implementors agree with me and when I talk to the programmer she totally agreed with me.I really must be more on top of things. Perhaps we should have made this change earlier . His programmer will re-do the ABLL's and from then we will change the program
On Saturday R and I go to my friend's house - her kiddos are out of town with her DH and I have a great time,her house is very differnet from ours in that there are no screens - here we have pretty much 1 laptop + 1 TV per person
There is something very calming about her house - they are religiously very conservative and are bringing up their childreen in a very oldfashioned way. I can certainly see the positive side of their lifestyle.
R is at complete ease in her house lolling about on her cushions while J and I drink cappucinos and biscotti on the patio
Strangely he suddenly discovers bikes ( of her kids ) and kind hearted girl that she is - she gives me one of the girls's bikes.
R has his head turned around in adoration all the way home in the car - now he is suddenly interested even in the little Trike that he was full of disdain with earlier!
On Sunday I cook in the morning and then do a lot of triking - this is his new thing. J told me yesterday that I need to not think that R will not be interested or R will not do it and she is right -
Its true - I need to keep trying
We are supposed to go to a dear friend's neighbourhood birthday party . Its a small affair of only family but she is a doll and asks if we want to come to just be around some other kids. But becasue of the rain the party has shifted inside the house and so we decide not to go as its a family affair and all the R will probably be feeling cooped -up indoord . We will drop by later in the week with a book for her daughter C.
I have a great time in Target with R in the evening - we have gone to the store just for something to do as its raining ( does anyone else do that ) . R is interested in all the trycycles and we try them all. He is much taken by a wheelie thing that sits on the floor. I stay strong and not buy it as its 50 dollars and does not look that attractive since there is only the floor sample and its clearly been tried by all the kids !!

Monday
I have a really busy day at work after a wonderful 3 day weekend. DH is very PO'd with me as I forgot to do something for him at work- plus I cannot make this week's neurologist appointmment( wee meet with a neurologist every 6 months just to make sure we are not missing something ) either and so I do a lot of things to mollify him - cut up mangoes, obsequiosly pander to him .

R has done a sudden turn around in his therapy session and is very cheerful and excited - I can see how much happier E ( his theraist ) is also at the change

After his session is over - we jump swing and "bike ". Though in the trampoline he is quite parasitic - he wants me to pick him up and jump . This is no easy feat !!

Tuesday
I get caught in a Miss Marple recordingfor PBS the one about "Sing a song of Sixpence " its one of my favorites and I must watch it till the end. I really waste a lot of time. All we do today is bike and jump for a little bit
We did meet for lunch at Mc DOnalds though

Wednesday
DH went for golf this evening - I love it when he goes out with his friends as it makes a big diference to how happy he is if he gets fun- guy-time. Its really not easy to be a SAHD or SAHM
R sits in my lap in front of the frig magnets - making the words no longer interests him - so I entice him by saying things - like - I am trying to make "RAT" what should I start with - then he quickly gives me the "R"
I guess like me -my son is a sentence completer -

We jump and bike for a while - R is not at all good with the bike - But I am so thrilled he is trying. Mrs C and Mrs J stop by to say Hi - they are sooo sweet and are so loving to R - Mrs J has had 3 bypass surgeries and owing to this has the best perspective in life - She is probably 60 but I love her so !!When I had told her about Autism - all she said was " Well its great you know .. now you can find a way to help him "
They ask me how he is doing . I say "Great !"

As if on cue R promptly grimaces and stims with his hands!

Its sooo funny how some autie kids travel the spectrum on a daily basis - depending upon whether they are in their comfort zone or not

Thursday
Its a crazy day today as I have to make a couple of presentations plus have back to back meetings all day. When I get home - his speech therapist is here so I could do some work but I am hungry and tired and so I and DH loll around in front of the TV and watch "Leverage"
When his speechie leaves, I also realsied I did not plan well for the week's food for R's gluten free diet so I make his dinners and his Pizza and also bake some cookies for him. By the time all this is done - it laate and I take R out for jumping.
He nowadays wants me to pick him up and jump - becasue of Miranda, I have been thinking about Equine ( Horse ) therapy. But as I see R in my arms with his legs wrapped around me - holding my pony tail , kicking my side and gurgling joyously - I realse I am providing equine therapy as I am the equine.
Horses have tough lives.You never realise till you are one - LOL

AS soon as we get the bycycle out DH decides to mow the lawn. R cannot stand the sound of the mower and so we go inside and I have to feed him and DH etc plus clean the kitchen etc

Overall

Its been a work filled week of accomplishing lots but also of having too much work on my plate and not being able to give R quality time. The 3 day weekend was great though . Plus I have been adjusting to my diet which offers plenty of food but is a very unusual way of combining food and I just am not on top of things
Sadly the weekend is already overscheduled as well!
Oh well - Such is life !

Love is all around

Today as school is off and I don't have a meeting at lunch – I meet DH and R and McDonalds for lunch ( only the finest for us J )

As I have eaten lunch before coming ( I have started a diet ) and because R is ravenous and is splitting his time between gobbling McNuggets and fawning over me- I am free to indulge in one of my favorite pastimes - people watching

On our side is a man of no interest – chain-eating his fries and reading his book . I want to read the title of the book as I am wondering if fast paced exciting books would make you speed read whereas slow paced books by contrast would make you savor your food slowly. But I cannot as he has his book flattened – and leaves while I am looking at the table in front.

This table is much more interesting . There is a mum and her two kids. With them is a very very very old man. The mum is overweight and the old man is almost blind as she is always pointing out the kids- Sara and Danny to her. The two kids are overjoyed at the ICE AGE toys in their happy meals and are making much noise

At first I think the man is the grandfather but turns out he is not –

The mom – overweight and dressed in the mum uniform of Capri pants and loose T-shirt – is sooo kind and patient. She is chattering away to the old man loudly "SARA IS LEARNING ITALIAN AT THE LIBRARY. DAN WILL NOT DO IT. HE JUST WANTS TO BE ITALIAN… YOU HEAR WHAT HE JUST SAID ( LAUGHS ) HE SAID HE DOES NOT WANT TO BE ITALIAN…. JUST A REGULAR AMERICAN…HAHAHA"

He misses the joke when he says "Dan – you don't want to be Italian ? Do you want to be Jewish?"

She is unperturbed -she is happy at just doing her bit

The kids are fighting with their ice age toys and the mom is berating them for their fighting and their late bed time last night "THEY WERE ALLOWED TO GO HALF AN HOUR LATE TO THEIR BEDS ONLY IF THEY READ, BUT THEY WATCHED TV" She yells at the old man. I know she is only pretend-angry – she simply wants to give the old man a range of entertainment. So when the comedy failed she is trying some drama.

I see her scratching her head for something else to say " I AM GOING TO THE CAREER CENTER AT THE UNIVERSITY TO LOOK FOR A JOB "

I see her making an appointment to get the old man to her house on Saturday not bothered when he suddenly yells at the kids "how can you not know your scriptures?"

One of my colleagues' husband stops by – he is also a stay at home dad. His daughter has a feeding tube and he talks about his theory on why she does not eat.( for she will not eat at all) He is one of the finest parents and I coin a new term for him and tuck it away in my head to tell his wife – my friend and colleague about later – ( "Fother " – a father who is also a mother) . He laughs and says how his daughter are so expressive – they want to marry their parents so they can live together forever!

( my colleague and I have a lot in common – we are both the wives of voluntary SAHD's –we also call ourselves the Smotherers cause we are so effusive in our hugs and kisses!)

After the rapidreader-fryeater leaves, his place is taken by a couple – older couple – who turn the paper in their food tray over and are discussing the sugar content of all the menu options – wife reading the table upside down. I see the old familiarity in their interaction by the way in which the wife is pointing out all the options which he could have that are low in fat but still tasty. He is newly down the path of looking for low fat options ( perhaps doctors orders? ) versus us women – who have been considering sugar and fat all our lives !

An old woman walks in on a walker- with a night dress with hearts on It – helped by her daughter.

The couple reading the fat grams leave and a mum and her daughter take their place. The daughter is wearing a T-shirt with "Princeton" written on it and her mother is urging her to eat all her Mc Nuggets.( she is thin as a rail and has ordered a mere 4 piece that she is carefully picking out the fried cover off of )

I am doing the same with my son ( of course he is only 4 while her daughter is around 20 ). I suppose one never stops worrying about children

I write down a schedule for R saying – I will be going back to office – and he will be going to the zoo. I see R put himself together stoically

He is sad but he will not cry( because I wrote down on his schedule "NO CRYING" ) and looks away when I strap the seat belt on and kiss him telling him about the lovely evening we will have at home today!

" Byduh " ( bye bye ) he says quietly through lowered eyelashes, his face expressionless.

I am on a diet and DH hates it – he is simple guy and thinks I should simply keep buying bigger clothes." If you feel fit and healthy .. there is no harm in being fat" he tells me .

But I am vain and I have told him that its important to me to lose 10 pounds and if he is my friend he will support me.

Still it pains him deeply to see me eat neither a fry nor a nugget.

So he tells me resignedly that he will run to the grocery store and get me some tofu and veggies and Salt – free seasoning for dinner

As I bid my two guys goodbye – I am just suffused with their love and my love for them.

This hour in a fast food restaurant is a little slice of heaven – so full of love is my life and of those that I saw today.

A woman helping an old man from her church have a fun day , a couple trying to take care of each other's health, a daughter helping her mum have some fun even though she has to use a walker, a mother worried about how thin her daughter looks, a husband hunting down some tofu and a loving autistic boy

Love is all around me and life is good !


 <

Saturday, July 4, 2009

Being Loved

We are continuing with our battles over screen time.

Last night R is throwing a weepy tantrum at not getting the remote.

I lose my temper and tell him in a loud voice that I am disappointed with him

I sensibly know that I am at the limit of my patience and go off to finish the movie "Secret Life of bees" with DH.

The movie is all about a young girls desperate desire to connect with her dead mother and feel loved.

"There is a big hole in my heart where my mother's love should have been " the protagonist says

It occurs to me that a large part of the literature is devoted to the mother's love.

Never to what the child gives to the parent

Perhaps its because the books are written by the adults

In this story, ironically, its the love hungry child that seems full of love.

Last year when I was looking for an Autism sticker, I found there is such a huge preponderance of stickers that say simply "Autism awareness" and many that say " I love someone with Autism".

It seems especially the literature of Autism is focussed on the mother's great devotion and love.

Always from the mother's side it seems that there is the love, the devotion, the desperate search for help for her child.

And from the child's side, there are merely the special neeeds

The autistic child's role only to receive , never to give

Surely a mother's love is a wondrous thing

But what about the child's love?

Last evening after our tantrum, R plays by himself for a while.

When I go back upstairs up and apologise for yelling, R holds my face in his hands kisses me and says simply "Shee Ma " ( sleep with Mama)

Here is all he wants from his bad tempered mother:

that I should be the one to put him to bed

I have never been loved quite this deeply and unconditionally before.

Been the center of someone's world quite like this.

Pure love with no grudges ever.

Here is a picture of me and R from 4 years ago before I knew about all the things that would happen to us



I wish I could tell the younger K

Its not going to be what you think

It will be hard

But it will also be gorgeous.

While this statement is a truth "I love someone with Autism"

The charming corollary that has blessed my life , is that

Someone with Autism loves me

Here is to the special love we get from our special kids


Friday, July 3, 2009

Week of June 29

Monday

R decided to wake up at 2 am today morning . I was very very grumpy as a result and snapped at him. With no sleep and mom angry, he was all set for a bad day

I send him an apologetic email with hugs and kisses and got DH to show it to him

I took 30 minutes off from work to go for the music lesson and also took along some WONDERPETS crosswords as a peace offering – R was very very stimmy and wanted full control of the piano and had NO interest in learning the tune that Miss P was trying to teach him. She claps her hands a lot and I think this is an additional distraction for him. She plays SO beautifully though and he was entranced every time she would play something.

But he wanted full control of the piano! When he does not want to do things he became giggly and hypotonic – limp in my arms, lying on the floor . He is the master of peaceful protest.

I think I need to get his piano ( one of those cheap electronic music keyboard) out again

We were very sleepy in the evening – And do dinner before we went outside which was very good

We jumped on the trampoline a lot – Taking turns is something he does not do – but we hold our hands together before we start to jump and we chant something

So I decided to do the numbers and take turns with that – So I would say 1 and then R would say 2. He caught on immediately and we started jumping at 20


 

Tuesday

When I drove home – he wanted to get in the car. Because of the show Turbo Dogs he is really fascinated by all things with wheels but especially cars

Anyway we snuggled for a little bit – he had Sneaked DH's remote ( as we have DVR – the remote is the most powerful of all attractions for R )

He dropped It on the floor of the car which Is the same color as the remote . As we had been talking with Danette about Visual Spatial Processing – I let it be to see if he would remember it . Of course he did . All his challenges disappear when there is something that motivates him truly.

DH went for golf and I gave R a snack which he did not eat but I knew he was hungry

He threw a first class tantrum when Miss E came for his ABA in the evening –( I mean one of the worst ever) – falling on the floor crying etc- I figured later we had not done our whole snuggling routine. I guess some snuggles in the car did not count

But even through his crying- he did his entire routine which is very funny .

I was very upset at his crying. I want him to enjoy all his therapy and he usually does. Also his ABA is not the usual kind of ABA – there is literally 10 minutes of discrete trial and the rest of it is all natural environment – Very different than the ABA he used to get earlier

After therapy is over he is very irritated still and I actually let him have the remote – I show him 2 schedule options and he chooses dinner first – but when I bring out the real dinner – he starts to wail again. I hug him and lead him to his PECS book. He picks out –his sentence stick and arranges the letter – "I want Cookie "

Okay so he wants to eat but not veggies and meat but junk

I give him a couple of pieces of cookies and then his dinner . As soon as he eats dinner he has turned into an angel!!

He has started to paint with watercolors ( just scribbling really ) but I am very happy about it – though I teach him dip brush in water – then in paint and then on paper . I notice him doing this meaningless thing- dip brush is water and then put wet brush on the different colors in the paint palette.

I lament at his lack of Executive Function and then suddenly I realize that what he is doing is MUCH smarter than what I taught him. He is making all the colors he plans to use wet – basically converting them to liquid color before using them . Also I think he enjoys how the color palette itself looks so much better when all the colors are gleaming and wet )

As always his unique perspective makes me think how much these different minds will help us look at things in different ways if only we keep our minds open to it

We do our usual sensory routine

This time I try out doing turns with the alphabet and am surprised when he is able to do it though he misses a few letters!

The rest of the evening goes well and he is an angel while we run errands etc


 

Wednesday

Because of the tantrum yesterday – I have a detailed written out schedule for him and have asked DH to tick off things as they do them. We meet for lunch and eat at the new organic store which has a little restaurant as well – we have smuggled in McNuggets for R and I am feeling ridiculously self conscious ( as the mother of a fast food eater ) while eating it – R eats amazingly well and I am the one who spills water and sprite

R usually does a major crying marathon- when he says goodbye and its very upsetting for me – but DH has brought along the schedule and I show him that I have to go to the office and show him that I will be back in the evening and that he has a fun afternoon –

Shockingly this leads to a new thing – NO crying and R looks sad but waves goodbye and blows kisses ( in return to my blowing kisses – another new thing )

Could this be the reason for his Separation Anxiety – that every time I say good bye he wonders if it's the last time. My heart breaks at the thought that I have missed this simple solution to his anxiety for so long and I resolve to be more intentional with written schedules

In the evening 20 minutes before E is to come – I show him he has ABA – when E comes he tells me he wants snuggles and I ask E if she minds doing the set up while we snuggle for 2 minutes – This is another good thing and R snuggles with me for 2 minutes and then has a great time in his therapy

It occurs to me that many of the tantrums in our kiddos result from a feeling of not having any control and that giving in to them a little and showing them the schedule gives them a sense of control

DH is busy finishing a book as its overdue in the library and he is very frugal and the thought of a 10 cent daily fine is making him finish this book obsessively ( whereas I am happy to pay a fine as I think of it as a donation to the library LOL )

R has discovered you tube - I know not how – and watches his videos on youtube – I think of Julie and Daniel LOL – I end up turning off the computer as both R and I are too obsessed with the computer

We do the usual Sensory routine and so R gets no computer for 2 hours before bedtime – I want to test the theory that no screen time before bedtime = better sleep – But BOTH r and I toss and turn- finding new cool areas on the sheets - for a couple of hours before we are able to sleep.


 

Thursday

DH and R come to the library and I meet them there. I sneak up on R and sit behind him . I love to look at him in these unobserved moments.

He is enraptured by his book and does not notice . It's a book on numbers (No Surprise). I put my arms around him and he jumps. He see me and is so excited that he must stand up and do an impromptu dance. We read many books ( he picks several books on numbers)

I am taken aback by how many there are. Clearly parents of preschoolers are keen to teach them numbers.

I want to look for some books myself – I want murders or cheerful books. It is surprising even cheerful sounding books will have gloomy climates inside them. Last week I borrowed a book that actually had HA HA in his title and it turned out to be a grim satire – full of desperate sounding people checking into rehab ( while simultaneously making it clear that they intended to get back to drugs as soon as they could )

In the library R bursts into tears everytime I disappear out of sight. And then when he sees me he rejoices loudly . While he is going through an entire gamut of emotions he is quite loud .These transgressions go unnoticed however

Owing to the presence of two tantrummy brats that are there. Their mums look mortified. I know they are thinking what we must be thinking – Little do they know that at least one mother in the audience is deeply grateful to them LOL I say a silent prayer of thanks for the belligerent Maggie and the hapless Dan.

I scurry back to R's side when angry Magggie has been dragged out of the library sobbing and yelling "want now" want now"

I go back to the office – Again telling R the schedule is helpful – R loves going to Walmart and so he has something to look forward to as well . I go back to the office while Dh and R go grocery shopping

By the time I get back from office and snuggle with R his speechie is here . R for the second time this week throws a first class tantrum and his session is wasted – His speechie speculates that she had said "All done" meaning she was all done with an activity and R had taken it to mean that they were all done with the session. He had not had enough of a break between running errands and his speech session and so when his hopes were raised and then dashed he cannot take it any more. He simply loves his speechie and loves his sessions with her

I am very distressed at these tantrums. It is not easy to judge when the tantrum is caused by him being overwhelmed and when he is simply being a brat and needs a firm approach. ( I tend to err on the side of compassion though ). His speechie leaves – assuming ( correctly ) that she will get nothing more from him.

DH insists that I spend the evening watching "The Curious case of Benjamin Button" with him instead of doing my routine with R. Its a long movie by Hollywood standards (almost 3 hours) and I really enjoy it. Also breaks are good – as at the end of the movie I have a new hypothesis for the tantrum

In the beginning of the session his speechie had shown me just how she cannot get the G sound any more from him. I wonder if he was hurt by this remark and was carrying this hurt with him.

I resolve to ask her to make a big fuss of him tomorrow

A couple of weeks ago when R had inexplicably burst into tears when me and my friend T( in Orlando ) were talking – T speculated that perhaps R now understands that he cannot talk and all of us talking – excludes him by definition . This is the part that breaks my heart really – not in the way disability affects my life -but in the way it affects his in not so nice ways.

He understands more than it appears and I make a mental note that In our next team meeting we will no longer talk about him in front of him except to praise him!

Friday

We all wake up very late ( 9.45 am ) R is slightly warm to the touch. His speechie is to come at 10.30 – so we snuggle for a little bit and then sit on the potty and get ready . I talk to his speechie for a little bit about my theory that he may have been feeling hurt-

I love her – she agrees and says she is going to always make a fuss of him – she jumps around with him on the trampoline and I watch ( its interesting to me how he does not try to play the same games with her as he does with me – Bend Jump , count jump etc ) This is great and shows that R has different equations with different people. His speechie and he have a different set of game.

After jumping they do their Oral Motor exercises. We discuss how his GLOBAL APRAXIA is his main challenge – we are also talking about his ABA program and perhaps his discrete trial needs to change.

He has been having the same activities for a long time !!!And perhaps he is bored

Today is no office and we have a really good time as the weather is perfect – we run errands.

I buy a couple of shorts and a dress . All these clothes are chosen by R– he has incredibly good taste and I eventually I find that the things he picked out suit me better. He insists I buy a purple dress instead of the green one and while purple is not a color I wear usually – I am surprised how nice it looks on me. It reminds me of a day last year – we were at the Van Heusen Store at the Outlet Mall. R was running around ( I thought ) then I saw him earnestly engaged in talking with a woman. She told me that she asked R what to get and she is buying the clothes he pointed at. How sweet people are!

I have been religiously following his visual schedule today carefully ticking off every event as we finish and this is incredibly reassuring and calming for him

He is off to Musical Gymnastics with DH and so I have a few minutes to write

When he is back we will do Piano, Paint, Jump Swing and Swim and the other things in the day


 
 

Wednesday, July 1, 2009

Think Good Thoughts


We are on our way to Florida a couple of weeks ago .


We are taking one of those discount airline. I have purchased the tickets. DH has been teasing me about all the options I have purchased like "Priority Seats"

"I have always wondered who are the people who buy all these options.. it's a ONE hour flight .. well now I know .. its people like my wife " he smiles smugly .


I assure him pompously that I am sure that the seats will be practically First class ( not mentioning that I actually felt bad because the tickets were so cheap and I am worried that this airline like many others will soon be bankrupt and so I have added on some options as a sort of donation with them.)


First class they are not . They ARE towards the front


But DH has to sit separately. I am thrilled when I see R reach his hand back to DH to get a reaction from him and does a lot of peeking around to see when DH does not tickle his fingers.

This is new.


The woman sitting on the third seat in our row is an older woman – maybe in her 60's . She has carefully curled hair.

The Baby boomers are always so much better dressed than the Gen Xers

I have bought a whole bag of tricks for R – Blues Clues books and Little Einstein books – a stamping set and so he is busy.

When the woman asks the attendant for some water – the attendant says its 2 dollars

"They charge for everything.. Whoever heard of charging for water ?" she expostulates

"Its shocking " I sympathize (secretly reassured that the airline IS moneygrubbing and therefore not headed for bankruptcy )

This has been the icebreaker and she starts to chat ( I love people who talk to me on planes though I try not to initiate conversation as my friends are always complaining about people who talk to them on plane)

She is off to Florida to visit her daughter and grandchild. She visits them twice a year she says

She takes a lot of trips with her friend. She has never been outside the US but her friend has even been to India, she tells me eagerly.

Even in and around our hometown she has been to plenty of places. She is so thrilled when I tell her my place of work as she has always wanted to do a tour of the company museum

"We went to Graceland last year. You know when I was in college Elvis was starting to get popular. He was going to do a show in my college but the Superintendant of the college refused. He said his movements were indecent " She giggles looking like a schoolgirl her face pink and alive with the memory

After some more chit chat, her expression changes again when she talks about how her husband after 35 years of marriage, has left her.

Later I find that she has been divorced 12 years. (seems a long time to me )

But the memory and pain as she talks seems recent and real

"I don't know why " she says" I was sick for a long time so I was a little out of it. I thought things were going fine but one day he just did not want to be married to me any more. I stayed in the same town for 5 more years hoping he would come back. But he never did. He is still with her ( the other woman ) "

I don't know what to say so I put my hand on hers and say non committal things about men and mid life crises.

As we start to taxi down – I am awed by the power of our minds.

Its as though each time we remember a memory – we RE-live it.

This lovely woman sitting by me has –re-experienced the forbidden joy of Elvis from her youth and the pain of her husband's betrayal – so many years after those incidents .

Maybe we generate that same physical chemical response in thinking about an event, that we did when we experienced it.

When we think about something pleasurable, we relive THOSE pleasant feelings all over again.

I know how miserable I made myself that first year of Autism when I thought about mercury, vaccines, denial etc

How often I went over those bad memories in my head – torturing myself with all the things I would have done differently if I could only go back in time.

Today I make a conscious effort to be deliberate about the movies of memories that I play in my head.

We may not be able to get rid of all the recordings of the tragic episodes of the great drama that is life

But we can surely delegate them to the back shelves of our memory library.

Allowing them to gather dust and become unrecognizable over time.

As we land , she pulls herself back together and talks about how much fun she is going to have.

I hand her my business card in case she ever wants to do a tour of the company.

( Though I know she will never call because she has said too much. )

I find I have learned an important lesson from her though.

The best clean-up job I can ever do, may be to declutter my mind.

Save the good thoughts, trash the bad.

Here is to reliving the good old times and making some new ones!

 

Floortime Lite Mama

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