Saturday, May 30, 2009

SOOC Saturday - River OT

Occupational Therapy is critical for R - Not covered by insurance -from school he gets a paltry 30 minutes a week
But we are becoming quite adroit with finding OT moments in nature and in everyday life
This is a picture from LAST Sunday -
We waded into the river and with the stones beneath the feet and the rushing water
Learned through throwing stones the concept of
1. Colors in nature
2. Big and Small
3. Far and Near
( R is a creature of drama and wants throw big red stones far )

Wednesday, May 27, 2009

Think good to your child

A few weeks ago I was at Kohl's ( surreptitiously) to buy some non stick pans

(Last month I read an article on the evils of Teflon and gave away all our non-stick despite much pleading from DH –" its poison.. do you want us to slowly get killed by our food " – I told him sanctimoniously.)

A few months of cooking in stainless steel however, has weakened my resolve against non-stick because- the other stuff – well it sticks )

I see this couple with a little girl- maybe 4 .

The little girl is talking non-stop. The way they are listening to her nonsense in that adoring fashion announces clearly that they are her grandparents.

(I recognize that fatuous look – as I have seen it so often on R's grandparents face. )

Distracted by her chatter (as she is advising the couple buy all sorts of nonsensical products) I drop the pan I am holding.

The man turns around and jokes "Quickly put that back on the shelf.. we wont tell anyone "?

I smile back and say – "your little girl is adorable – are you guys the parent or the grandparents"

"Grandma!!" the woman chuckles back delightedly "but thanks for thinking we could be parents"

As they walk away after some more chit chat – their gait is a little springier and they both have smiles on their face

If a single compliment from a stranger can do this

Just think of the immense power of the energy that a parent sends out to their child.

It's like sunlight to our little saplings

In my own life as a professional and grown up I see this. When working with people who I know respect and love me I become smart and witty and just flower. When working with people who are critical of me I become defensive and strained and shrivel up .

Most of the time our energy for R is very positive.

And I think a lot of the reason why R is doing as well as he is doing is because of the great glow of positive expectation that surrounds him.

Starting from his parents, seeping into our extended family and trickling into his team of teachers and therapists.

DH especially is very good with a general feeling that R will be fine and has been from the start.

I took a little while where I was so swamped down with guilt and anxiety ( still there but no longer my primary feeling )

But I need some reminding these days as we are coming to terms with just how bad the Apraxia is.

His motivation to speak is great. His receptive language while very immature is also present

But his ability to form the words – its just dreadful

Even I have trouble understanding him and he will look at me asking for something urgently, with a look of such great expectation in his eyes.

It simply breaks my heart

One of his speechies said this at the last school meeting " we don't know if he will ever acquire functional speech .. but he is so intelligent he will certainly communicate"

The first few toxic words have rung in my ear and keep peeping out of my subconscious

I am at such a loss – without speech (ever ) how will he meet other developmental social milestones?

Some days the task of being a good mother – which means providing all the things your child needs – is so daunting.

But in spite of the terrible challenge our child face

Or maybe even more so because of it

Sending out positive energy is critical. And I don't mean simply loving your child. For even in my deepest anxiety – I love this child deeper.

What I mean is, beaming out the message to your child


 

You are awesome

There are so many wonderful things about you

I am blessed to have you in my life

You will do awesome things in life


 

This is not just for the great good of your child – but also for our everyday happiness. Everything is better in sunshine

Really what is a good life if its not a sum of mostly happy days !

To start, perhaps we need to start beaming out a positive message to ourselves too.

I know I need to replace my own energy –turn anxiety into hope.

I asked our speechie on Monday what she thought.

"He is only 4.. he is so smart and he is very keen to talk.. I certainly think he has a good chance"

I will hang on to this thought today down and reaffirm to myself this important hope ( and prayer )

R will be awesome!


  

Saturday, May 23, 2009

SOOC Saturday - the abilities of Autism


R looked at this set of cards the other day and kept saying fow and the
I could not figure out what he was saying till I found the two missing cards which had slipped behind the sofa cushion
How can someone look at this jumble and know whats missing in a series?

( confession- R is being a whiny little rat this morning and I am trying to start a Cycle of positive thinking .. sigh- harder some days than others !!!)

Thursday, May 21, 2009

The Parallel Universes that Shape us

On Monday, DH had a game practice.

As there is famous children’s park near the practice court, I and R went along.
Its an innercity park – very different from where I live.

Almost like a parallel universe.
And not just in the diversity and other socioeconomic things that are obvious on the surface.
But for things that my eyes- shaped as they are by my own life - notice acutely

First,for being around Neurotypical kids. I am frequently amazed by just how different they are.

Typicalness is abounding.

Its in the very chemistry of each interaction.

In the scraps of the conversations around me.

Two boys are talking. One of them is casual, barely there. The other is eager( and trying not to seem to eager ) and placatory urging the careless one to try and change his nature so “people” will understand him better

Two little girls are negotiating a tradeoff.

One is asking to wear the other girl’s necklace and in exchange she will push the girl with the necklaces on the swing 20 times.
The little girl with the necklaces( cheap plastic Mardi gras type necklaces ) is negotiating back, feigning reluctance and assuring the other girl that her mother told her these were extra special “jewels”

(I notice later that the negotiations have failed. Perhaps one went too far on the “don’t really want what you have” continuum.)

NTness is displayed in their desire to define and express themselves


NTness abounds in the signs of executive function as well as an urge to engage people – anybody –even those you don’t know.

Its evident in a kind of treasure hunt that someone has set up.


(I of course being quite NT myself am compelled to follow the signs and am bereft when the trail ends abruptly after #5 the “Sway- Fun”- either wiped away by the diligence of a worker or perhaps the child was distracted before they could complete the trail )
All the children are engaged in the dance of social interaction.
R on the other hand is only now starting to notice the small people – his peers. He looks up curiously from the bottom of the slide , as the child on top of the slide is yelling “MOVE”( I don’t know if he does not know the word “move “ or if he is astonished that this little person intends R to do something )R is so stunned when this child slides down and he is displaced from the slide.

I am proud that he does not cry and that I did not intervene.


Second is the different style of parenting .
These parents clearly love their children – after all they are choosing to spend their evening playing with their kids in the park.

But their style of parenting is sooooo different from my own.

Clearly they have not read the books !

In front of their children ,they are smoking and swearing.

Bending forward with underwear showing .

Not trying to hide rolls of fat.

Free.

Relaxed.

The careless way they have around their children.

A general belief that their kids will be just fine .

No anxious eyes watching their children,

None of that fear- that I see in the eyes of Autie moms - that, but for their constant watchful care, their child will be irrevocably damaged.

I look on (aghast) as one mom with raucous exuberant personality who was turning cartwheels earlier ( can you see her upside down in the background ) is getting her child to hang on to the balance bar.
She then moves away - ignoring his protests-assuring him he will be just fine if he falls ( he does fall – but the ground is soft and he is just fine though he cries for a few minutes -unattended )



Autism land is completely different parallel universe from this carefree parenting.
Here - we are so profoundly aware of our actions .
Deeply believing that all our actions have permanent meaning for our children’s past present and future.
Example our belief in the following three things we are responsible for

One, we did not prevent autism.( by not doing whatever we did - does not matter what it was)
Two we did not notice autism when it started.
Three, we are not curing the autism with all the things our kiddos need.

The amount of responsibility we put on our shoulders is staggering.

In contrast, this completely carefree way of parenting offers an unbeleivable alternative in all its assumptions.

Even though I notice just how different R is from these NT kids – I also see how he IS developing.

Noticing the other kids

Knowing when to retreat to the safety of a secluded area with numbers


Learning how to pose for the cameral .As always, its taken me showing him the logic of posing ( by showing him his pictures in the camera after I take them ) rather than him just posing for the picture because I want him to .

Also, even when I see just how different my parallel universe is – I also see the similarities.

R is not the only solitary child in the ground. Inside this structure is a 12 year old child, overweight and with a visible aura of defiant loneliness.

Can you see him inside the slats of the window?


When I smile and ask him if everything is okay.( knowing at that moment that I should have left it at the smile , people- especially lonely people -HATE pity )
He looks back at me and says “jus playin my videogame”

Which would be believable if I had not seen him earlier eyeing the children playing with a look of naked longing.

Similarly, this mother who has left me aghast when she asks her young daughter to hold her cigarette while she hoists her jeans up , is showing just as much pleasure as I do when she catches her daughter coming down the slide.

Indeed there is lot that stays the same in our parallel universes

Parallel universes should be no surprise to as I am an accustomed space traveler.
Living, as I did, for the first 26 years of my life in India – a country where parallel universes are the rule!

And then coming to a completely different world

The parallel universes in which I have stayed at different times are so distinct

They have made me who I am

India
America
Motherhood
Working motherhood
Suburbia
Autism

and so many more.

How many parallel universes are there?

How different my life- and indeed I - would be - had the journey of my life taken me to different universes than the ones I landed in.

And the two hours pass and its time for us to leave and join DH back as his softball game is done at 8
Though I am sure that R musts be very overwhelmed, he surprises me by not wanting to leave and has to be bribed with the promise of a lollipop.

So I step back into my world and join DH- whose team has lost – lost so badly in fact ( 1 to 21) that its funny.

Another couple – friends of ours - comes out of the softball field

You went to the park ?” she says,” I was planning to , but I got scared? It felt weird !How was it?”

It was very weird ” I answer "But I had fun"

Saturday, May 16, 2009

beyond the window of opportunity

"He is 4 years and five months old"-

I find myself saying if anyone asks me how old R is

While parents of Neurotypical children will say their kids are 3 or 4 or 5
us Autie moms are more exact - much more exact

and will often say he is 3 years and 2 months old or she is 26months old

Its something odd that I have noticed about us moms of Auties

I think I know the reason

Its the monster myth of the window of opportunity

You see - us Autie moms are told that there is a window of opportunity.

As though our young kiddos brains are malformed lumps of playdough-

which with just the right kind and large doses of therapy we will turn into the normal brain

Which is why in the early months of diagnosis you will hear things like -
I researched madly
I stopped sleeping

I read every book

I tried the diet

I went on all the message boards

I am so confused .. if only I had a crystal ball and knew what the right thing to do

I am trying to see if I can quit my job

I am trying to see how to get 8 sessions within a day

Frantically we seek the right answer

In a race against time

Because though the right treatment is so critical , even while we are researching the playdoh is hardening
The irony used to strike me often as I used to trade off between reading "Let me hear your voice" and doing Floortime

In addition we are also protecting ourselves from the shock of the next year

We cannot bear going from one year to another in one day

We must brace ourselves each month - 3 years and 3 month and so on

Early Intervention is certainly critical

But a dangerous corollary of this window of opportunity theory is that it implies that once our child is 5 or older - progress will slow down tremendously

So when we are saying our child is 39 months old, we are also saying - only 21 months left

Once they are 6 we no longer worry about being exact

With relief and despair we can say - he is 6, he is 7 he is 8

Because the deadline is past

And our child still is not doing that thing they were supposed to have done by now

After 2 years in Autism land I can certainly say that the first year when R was supposed to have been the most playdoh-like he made minimal progress

If we had continued at that rate we would have been in poor shape

I also hear from my good friends with older kids how everything fell into place at 11 at 17 at 21



The window of opportunity while energizing at one end is terribly toxic on the other

I am doing my bit to combat this

When anyone asks how old R is

I shall simple say

R is 4

SOOC Saturday /Learning Math and Music with Trash

Here is an image from bathtime where R is entranced by the song Nine Green Bottles standing on the wall and is enjoying practising subtraction with empty Sprite bottles that I have saved up for Recycling ( yes we drink a lot of Sprite )

Weekly Round up and IEP ESY

Weekly Round up and ESY

PARENT THERAPY =TRAMPOLINE
Rather than talk about what we did every evening suffice it to say we jumped on the trampoline.
Yes that is what we did every evening – we jump – loll around- I sing action songs and try to get him to imitate the action-( Stamp your feet slowly .. fast etc etc - From the Spectrum Connections CD and DVD )
Plus because of the safety net it forms a sort of zone with no other distraction
This has been the perfect antidote to screen time and I am really rueing the rainy day that is today and was yesterday night

PRIVATE THERAPY =MINIMAL
His speechie was on holiday and one of his therapists was off as well.
So he had minimal intervention – he seems to be doing totally fine though

IEP AND ESY( Extended School Year )

The only thing of note was our ESY meeting on Friday
We love his school and are going to miss it terribly as he moves to a new school in August ( also like his new teacher )
We had been told that we would not get ESY as R is making great progress
We were also able to add the diagnosis of Apraxia. This has been a thorn in my side as they were unwilling to add it on – R has PROFOUND Apraxia – the worst I have ever seen and I have seen plenty of kids with Apraxia
His trying to talk is literally like a stroke victim
His school speechie who made some great points in the meeting in fact reiterated many things I had said in his previous meeting – as in Harness the Hyperlexia – write things down

Our Private speechie came to the meeting and that really helped

School speechie also to my pleasant surprise recommended augmentative device- another friend of mine has been talking of augmentative device for her son and after thinking about it for a while – I really think that this will definitely help communication and will also encourage speech

School Speechie also said something that kind of bothered me but like most things its best to face upto it – she said that we can not guarantee if he will ever get functional speech – but he will definitely be able to communicate properly as he is so intelligent

Apraxia is such a beast

Anyway on ESY with the help and advice of my good friends I researched the law and took in these arguments and basically we went armed with Doughnuts and this documents Anyway the net result was 12 days over the three months of summer
Sigh !!!!

In India there is a saying I dug up a mountain and found a mouse
Basically loads of effort= Minimal results

Paradoxically his teacher who loves him did NOT want him to have ESY

Though I was surprised - her main reason came out later- she says the classroom will have severely affected kids and she does not want R with them and pick up any bad behaviors
Though I am not sure if that argument really holds as R does not pay much attention to his peers

TRANSTION MEETING MAY 15 -2009

WHY IS ESY APPROPRIATE FOR R

RRegression and Recoupment
R thrives under consistency . We are afraid the Summer break will be like pressing the reset button
Over the Christmas break – Rhad a significant loss of ability to be engaged socially – despite of our best efforts
I noted in my blog that he was sort of coming back around in Early February – slowly.
It took us a month of intensive Floortime along with a consistent routine of school to get back the critical ability of joint attention and engagement.
He spend most of January self stimulatory behavior and lost the “with-it” ness that he had in December. It was extremely difficult in the month of January to get him to learn anything
Mid February to Mid May – have been so much better
R is starting to vocalize a lot more - he will use the beginning letters for most things at home

Emerging Skills
Ris working on key skills – speech and potty training. He is also working on writing.
Again we worry that we will be going backwards on these critical skills

Degree of Impairment
Ris fully autistic – he has all the core deficits of Autism as well as Severe Apraxia

Transition needs
Rwill be facing the change of a new school. At this crucial juncture its appropriate to provide as much structure as we can

Rate of progress
Rhas made suboptimal progress in key social goals – like addressing his peers by name, taking turns with a peer. Additional time is needed for him to achieve this

Then DH brought forth the fact that R has no friends which was a real puploo

Tuesday, May 12, 2009

Dont worry about protecting the world

"Mom, Look what I found" yells a little blond boy

We are at the Recycling center. All busy recycling with that curiously virtuous air of recyclers.

The boy is holding something out to his mother- an old Pizza box - empty- but for a old ( and not too mouldy) piece of pizza.

His intent for that slice is obvious."Can I eat it ?" he asks

Everybody looks away hiding their smiles- pretending not to notice

From the corner of my eye, I see the mother's aghast face.

"NO!!!Lucas come here RIGHT NOW" she says.

She quickly finishes her last box of empty Sprite cans and speeds away in her Green Taurus her face bright red

I want to stop her and ask -So what if he wanted to eat that last piece of Pizza ?Its nothing! Don't be ashamed !

But we Autie moms circumscribe our lives everyday because of this embarrassment .

We think so many times before venturing out of the house.

We cross our fingers and plan and plot before play-dates( and dissect everything afterwards).

We worry that we are spoiling family outings because our children are not acting like other children.

Its like we want to shield the world from our children's oddness.

(And then, perhaps, we also want to shield our children from the stares.)

If only he would stop acting so autistic in front of other people - we think.

But they cant!

In fact social situations are precisely the stressful situations when our auties are most likely to seek the comfort of stimming, bouncing, twirling, jumping and looking odd

One of our biggest jobs is to widen our kids comfort zone socially-instead of avoiding venturing out we actually need to do it again and again.

I know the feeling of looking odd.

But for the fact that R is so small and so very cute, we ourselves would look quite odd.

In a few years, when he is no longer so small, this will change.
I know this.

But I am teaching myself to not care about looking odd.I am choosing to wear socks instead of hoping that the earth will get carpeted.

What is the big deal about not standing out really?

R looks for numbers - the object of his affection - everywhere.

In the birthday card sections of the store- he will lovingly stroke the "1" of "you are 1", he will crawl to reach down to love on the aisle numbers, price slash signs will be smiled at beatifically ( now at 1.99)

He never means any harm and is never bad mannered.So why not let him be his own sweet odd self?

And so I choose to smile when R comes upon an unexpected treasure in the street - a torn UPC code and must run his finger along the graceful curve of the 9.

Let R love on the numbers

Let Lucas lust for mouldy pizza

Let the world live with a little oddness.

Sunday, May 10, 2009

In defence of unmade beds or how I spend mothers day


"Always make your bed first thing in the morning"
my mother would say"Make sure your bathroom and kitchen are really clean . That is the sign of a good housewife . Anybody can keep their drawing room clean"

But if an made-up bed spells a on-top-of-things-ness

An unmade bed which has had a few hours of morning snuggles, tea, book reading and general lollygagging spells pure happiness


Its always seemed ironic to me, that one of the things that most mothers of young children (including me) want on Mothers day, is a day away from their children.

This mothers day , I thought that I would do something different

I would simply enjoy being a mother as much as I could

So we lolled away the morning

And jumped away the afternoon


We ate pancakes( me ) and cookies ( r) for lunch

I talked to my beloved mother for a long time

The sun came out for a change

DH got me flowers, pancakes and a crazyexpensive instrument of torture( hair straightener) that I so coveted

And a lovely mothers day it was

Happy mothers day to all you wonderful mothers

Friday, May 8, 2009

Therapy Evenings or making the most of slim pickings

Overall a very low achievement week wrt parent therapy – the combination of dreary rainy weather with allergies is a bad one. Our sleep issues are also unfortunately back,
I was forced to make the most of what I had

Monday – R had almost too much therapy( 2 ABA hours + 1 speech + 1 cranial sac massage+ music lesson + lunch with Dad at Mall ) and so I just let him have down time- we played in the bath tub

Tuesday – DH went to play golf so once his evening therapy was over – we played with kidney beans – adding and counting. Beans and Balloons

Wednesday – Not much got done as I was making his organic dinners and his Gluten free Pizza and Cookies

Thursday – we recycled and put up the new ( and crazy amazing trampoline ) and bounced up and down for an hour

Friday – DH and I have cocktails to go to Sigh !!!- R had woken up really early in the morning so he napped in the afternoon and so was up and awake - we actually went outside at 10 pm in the night and bounced like happy crazy frogs for half an hour . Bouncing in the windly moonlit night maybe the highlight of my week
Saturday - Zoo- we had the company picnic and he did quite well saying hi to most men and kissing the hands of the ladies ( lol how sweet is that ). All the kids that were there in the picnic were overstimulated and running around so R did not look that odd at all ( I thought ) After we came back we got on the trampoline again - bouncing around again which was fun

The lady in the wig and other people with imperfect lives

"My wife ... well she is going to her honeymoon in Bahamas next month " my hairstylist laughs lightly while washing my hair " with another guy mind you.. oh yes I am totally fine..I think we will stay as friends"

Out of ear shot of his colleagues when he leads me for the hair cut – his eyes are full of hurt as we look at each other in the mirror.

He goes on "Last month I got home to find her sitting on the porch .. she said she needed to find herself" here he makes air quotes around the find herself.

"The next morning she put everything in my name and just packed and left. I have been bringing her things for the other girls in the saloon. What am I going to do with all these handbags and shoes"

I am struggling to reconcile the image of this woman( someone who leaves her marriage on a hunch ) with the girl I once met at the Mall with him.

They looked just like any other couple. The remarkable thing was her flawless skin. When I complimented her on it – she laughed loudly and said "Good make up is all "( winning many brownie points with me )

He continues "She is getting married on my birthday .Can you believe it . I just told myself .. that every year on her anniversary she will think this was my first husband's birthday"

Its hard to turn around to give a tight hug when someone has your hair in scissors. I have a feeling that warm sympathy would be out of place anyways.

Angryoutrageonyourbehalf is usually a better way to express sympathy in situations when it can be confused with pity- no?

So I say "That is just crazy …She obviously had problems. Clearly nothing to do with you.!"

"She is marrying a guy 2 years younger than her dad " he continues.

I tell him" Well I hope he is rich"

One big change I have noticed in LAA ( Life after Autism ) is that due to my seemingly imperfect life(motherofhandicappedchild), people tell me the truth

The truth about themselves I mean.

Its as though my apparent imperfect life(however perfect I may think it is ) releases them from an expectation of judgment.

Its very nice.

Like the way we Autie moms connect with each other.

Like how freely and intensely I had talked about a year and a half ago to a lady I met at an airport – a complete stranger – simply because she was wearing a wig on her head-and so looked like she was in chemo( she was ) . Once I talked about Autism, she talked freely about what a monster cancer was but she thought she finally had it beat !

As the blowdryer is on now – cutting off further conversation – I ponder about why do we wonder so much what people think?

The first truth really, is that most of the time people are thinking of themselves or even wondering about what WE are thinking.

However its so automatic to us – in fact I am doing it at that very time as an old lady on the chair behind me is staring at me.

Is she xenophobic?

It would be a pity because I so liked her loud laugh and her strident, specific instructions to her stylist about exactly what she wanted her hair to look like. She is not beautiful by any means but her attitude – even while carrying a cane and being very overweight – have made me smile and I would have liked her to like me ( kind of how I secretly want EVERYbody to like me )

Still she is staring away and I am thinking of the other truth

The second truth of course is that we cannot do anything about anyone else's thoughts.

I resolutely turn my mind away from the lady.

We come to the end and the hair stylist and I are back to our breeziness.

Like turtles who had temporarily shed our shells in a safe place we are putting them back on before we can go out into the world.

And so I tell him it's now his time to be a carefree bachelor again. Yup no more boring married life for him, he lies back.

As I walk past the loud lady she says" I can't take my eyes of you.. such beautiful hair.. I would kill for hair like yours"

I thank her and think of the third truth.

Which is that sometimes while they may be thinking about us.

Those thoughts may be nice ones


 


 


 


 

Monday, May 4, 2009

The things they say

Yesterday I bump into a friend after 3 years.

She is such a wonderful girl and we used to so enjoy hanging out but had slowly gone out of touch. We chit chat and catch up.

She touches upon some uncertain events that she has been dealing with. And how she has decided to go with the flow since things were so out of her control.

I laugh and tell her being an Autism Mama has turned me into a go-with-the-flow kind of person

I see her face change with the shock of what I said.

And I realise just how breezily I discuss R's Autism these days

It wasnt always like this.

I was very very sensitive - like a wound.

Every contact- no matter how well intentioned, hurt

To my close friends I wrote an email describing what we had just found out and asking for them to ignore me and pretend for my sake that they did not know what I had just told them.These good friends did just that

But the words of other people ( well meaning though they were ) hurt so deeply

"Did you see that Larry king show" ( where the mother was taking about killing herself?)
"I read this great book - this mother stopped giving her kid cheese and he became unautistic "( thanks for letting me know )

"I used to think i had it tough .. after seeing what you are going through -- I am going to stop feeling sorry for myself "( I always planned to get to the bottom rung of the pity ladder )

"Soon they will be able to screen for autism in utero " ( ooooh lovely)

And the worst

You must really regret vaccinating your child( I dont have a sarcastic quip for this one as this cuts so deep)

But the truth is that people are just looking for something to say.

To emppathize.Offer some hope! Maybe a solution.

All my life I have been deeply in love with words.

So much of my childhood filled with pleading for more reading time while my mom told me I was ruining my eyes and needed to go to sleep this instant or else horrific consequences would ensue !

But being loved so deeply by R - my child without words- has taught me to look beyond words

And so I listen patiently to this good hearted friend of mine who says things that would have wounded me so deeply 2 years ago

"I know there is the good autism and the bad autism .. does he have the good one ? she is going on "They cant attach - autistic kids cant"

She finally stops and says " Is he really bad ?"

"No", I smile back "he is the best"

Sunday, May 3, 2009

to love is to show it

"He coordinates his clothes so carefully.. he has great taste really ..except when its red .. red he adores to a distraction .. so if he starts with a red shirt then everything MUST be red " I am telling my MIL on the phone.

R's grandparents are besotted with him - all three of them.

And every night his gran will call to ask about what he did/said today. These ordinary boring scraps of his day will make her laugh, I can hear the smile in her voice.

She adds"you know Papa used to love red.. I used to tell him..don't wear it .. it doesn't suit your personality.. you wont be able to carry it off. Then one day he was wearing a red shirt that your husband had left behind. You know he really looked good. I feel so bad .. I should have let him wear all the bright colors"
Here are they on their wedding day 43 years ago




Papa ( my FIL ) was a quiet serious bureaucrat. He died 12 years ago from a fast moving cancer that took him in less than a month

I remember in the initial years after papa died .. Ma's regrets used to be all around wondering how she could have prevented his cancer - if she cooked healthy enough " I made fresh food all the time .. nothing stale.. just sometimes I used to add a little red color because we never had any tomatoes " she would say in tears.

But after more than a decade she does not mourn his passing as much, as she feels bad for about not showing more loving

Like letting him wear red

She always tells my that she has learned to show love from me

Before she met me, she would show you love by doing things for you - like cooking a fabulous meal or doing things to make their life easier.
She still does this ( I have resigned myself to my kitchen and closet re-arranged and filed when she visits us here LOL )

But she thought saying it was too silly.

Now she says all the time" I wish I had made a fuss of Papa.. I never fussed,,always too practical"

I am thinking of this now as I have just finished watching the reader ( the story is in Germany-about a boy Michael who falls in love with an older woman . The older woman leaves him one day without explaining. Many years later as a law student he is watching a trial where he is shocked to see his lost love being tried as a Nazi Prison guard. She is sentenced to life. And because she cannot read he sends her tapes of books he has read aloud.He never writes to her though or makes any contact because of his anger towards her Nazi past.But this part so catches at my heart. On the day she is released from prison. The prison manager calls Michael and tells him to help her after her release as she has no one no one at all.)

Tucking R in bed and trying to extricate myself from his hug without waking him. I feel a deep sadness for all the people ( like people who are in institutions and prisons for long periods of time ) who dont have anyone to hug them.Or those whose objects of affection prefer to leave things unsaid

My own life while so hard in many ways, is so filled with hugs, kisses, loving glances, baby talk, nuzzles.

Some days this abundant blessed life takes my breathe away

To love someone is make them feel loved

Floortime Lite Mama

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