Tuesday, September 2, 2014

R, A and K at the start of September


My dear readers

Can you believe its September already? Since fall starts early in Seattle – we can already see the glorious reddening of the trees and that delicious nip in the air.

Unlike Seattle natives - I am not a huge fan of summer and am rather glad it's over.

I am looking forward to the cooler air.

Even the return of the soft rain and the queer emerald light of trees that are so green that you could sink into their depths and never reach the end of the color.


Here is what we did and thought in the last few months 

ILS

We started the Integrated Learning System

 
Its classical music that you listen "through the bones in your head"

 
I have started this with great skepticism as it sounds like so many of these airy fairy autism things.

 
But DH who is both parsimonious and not easily swept away has decided that we will shell out 2500 dollars for it. 

This is a serious vote of confidence!

So I start with a spirit of resigned cooperation ( all married couples know this dance, I am sure)

 
R does not like this much either.

 
He keeps telling me that it's not the right music –"its Beethoven' sixth symphony 4th movement" – which is a terrible thing apparently while he wants "Beethoven's 9th symphony 3rd movement" or something like that.

Anyway I start with threats – that I will not take him to Sears (whose Hydraulic elevators are a particular object of passion right now) if he does not

And over the days it becomes a habit and he willingly enough submit to this therapy for 15 minutes daily.


Turns out DH was right about the efficacy of ILS. There are many unexpected firsts that have come

 
Imitation of emotion: Example: We were reading a story (the peddler and the monkeys who stole his cap) I dressed a toy monkey and made R shake his fist and say "You monkey you". And he was really able to do it. 
My autistic boy pretending to be a character from a story and acting out an emotion.!

Expressing original opinions Example: One day when I told him that he had a new therapist to replace Kate and said the name was Peter. He said shocked "Peter is a man??" I want a woman"

Focus, Attention and with-itness: No example for this - but I think you know what I mean

 

Seattle Autism Center

We have been here 2 years and only now do and only after being forever on the wait list - we have the great fortune of getting an appointment at the Seattle Autism Center.

Most of these appointments usually work out to be useless and we never learn anything new – the only satisfaction is that at the very least – we are leaving no stone unturned.

I act with an outward cynicism (this is one of superstitious beliefs that if I don't hope for anything – something good will turn up. Sometimes I exaggerate my lack of hope for this reason. A second reason is the realists' coping strategy – if you don't expect you are not disappointed)

But in my heart, I am 100% hoping that there might be something that we don't know, but they will.

In the car, I tell DH that if they ask us for "his history" and "our approach", tell us we are "great parents" and hand us brochures with "information"- I am going to blow my top.

I want them to spot something tangible- something that we were missing in his overall developmental plan. 

Maybe tell us why language is so slow for him despite us doing all the right things-Speech therapy 3-5 times a week for the past 6 years, enriched environment, Floortime, tech apps etc)

Two young women usher us in – after we waited and filled out a 1000 forms.


The artwork around - made by autistic children looks promising 


Then they introduce themselves and say that they are brand new. One is a nurse practitioner and the other is a trainee

I feel the hot anger rising within me and find myself saying

"We have been in this journey for 7 years- we really aren't looking for any feel-good validation or brochures about therapies – we are really looking for an autism specialist – someone who has seen a lot of autistic kids and can tell us a bit about the road ahead .. And you both are obviously just out of school"


They both look nonplussed and then recover with effort 


As I look at them, I also realized that it isn't their fault.


They are nice professionals who did not have any answers beyond the basics on Autism.

We go on tediously over his whole history –when did autism start, when did we notice something "was wrong ?" blah blah blah

( all of which DH has meticulously filled out in the forms – but we still had to say it out as well while the nice lady takes copious notes)

Then- - they tell us that we are "amazing" and "doing all the right things" and they handed some brochures on "information in the area"

DH tells me later that he did not think I was very nice.

But I am frustrated - Surely someone should know more about autism and what to do than us?

In the car we discussed why I was upset and why DH is not .


The thing is that even after all these years I feel that there is something that could be a step change for R- instead of this incremental progress. After all the time looking for a magic answer -there isn't one


Autism just is.

Acknowledging that A& K have certainly changed


The only useful part of this appointment was that while explaining R to these folks, I discover the following things about us – we have certainly changed over time as autism parents 

1. First, we are perfectly fine with R's autism (it's a different kind of acceptance than the "autism-is-a-gift" style of thinking that others and I have had in the past. I don't think around the gift-curse pivot any more) 


2. We are fine in every way – but language –that is the only thing that actually makes life harder for him


3. We don't sweat too much over his lack of peer interaction. This is a problem only for others. He is certainly not friendless just because he has no friends of his age. In fact R is more beloved than many children I know with a strong network of family, adults and therapists.


4. R has a sense of humor but its only for himself- for instance he uses his Augmentative Speech app to type in jokes for himself.


5. In the chaos that he surround himself with there is great symbolism and harmony. You just need to understand him – like when he take Pablo, Leo and Linny to the park – it means that he is going to go a place where there will be an elevator that goes to P( for Pablo and for "Parking" ) and L and L for Lower Lobby.

This(set of letters) for instance is a portrait of Bellevue Downtown. 
Letter R is for him and the other letters stand for Macy's, JC Penney, Hyatt Regency( he cannot pronounce Regency as he has only read and not heard it and his mis-pronunciation is so cute) Nordstrom etc ..


We just understand R so much better than the professional.

6. We don't question why certain things bring him joy – they just do. R cannot explain the pleasure of a Macy's gift card with no money in it anymore than I can explain the pleasure of ice cream . The only difference is that since the pleasure of ice cream is so typical – no one asks for an explanation. Whereas R's joys are seen as peculiar and warranting deciphering.

 

The new therapist

Is VERY VERY nice. Despite being a man R has taken to him So nice in fact that I am waiting for the other shoe to drop

Grans

The grans are visiting and really really bonding with R- they have always had love - but a connection is so much more.


I think my MIL does not like this house as much as the one in Knoxville .

But she is falling under the spell of this majestic state

Here are the "minus points"( as Indians say) of our Seattle house

First she loves us to be all together and the guest room is on a different floor than where DH watches TV

Second -there really isn't a garden – there is a forest -since the little forest behind our house has a stream that goes directly into the lake – we are not supposed to interfere with the natural things

Third, the house does not have any home improvement projects as it is a fully done house
All these things are anathema to my MIL as she is a very hardworking woman who loves leaving things better than she found them.

Ma says that she sees a LOT of improvement in R – R has really started getting connected with her as well – 

This was all thanks to a breakthrough moment. Y'all may know that R is obsessed with perfume?

One day R had been smelling DH's Polo Fragrance and had lost the cap. While DH was telling off R – MIL found the cap for him Oh how the tragedy turned to triumph

MIL and I have a common bond that is unique mums of kiddos with special needs have ( my SIL has a seizure disorder)

The other day MIL told us that if she had only given my SIL Phenobarbital when she was 4 months old – she would not have developed a epileptogenic area.
That my SIL probably had encephalitis.

I feel so sad for Ma as I totally understand these feelings of guilt -this particular brand of guilt – the feeling that we could have prevented something bad for our precious ones is something all special needs moms know all about 

 
Sightseeing 

When we first moved here – a Seattle transplant who lived in TN though her heart was clearly back in WA ,made this ridiculous statement .

I asked her – what do people do all the time because it rains so much?
She answered "there is so much to do that you will be laughing and crying at the same time. Laughing 
because you are enjoying all the activities and crying because you don't have the energy or time to do more. 
There is THAT much to do in Seattle"

Guess what? She was totally right.

WA may be the most beautiful place on earth. Here are just a few photos from some of the glorious places we have been
Leavenworth : Fake German Town but SOOOO gorgeous


Space Needle by night- Even more beautiful.


Kahler Glen and Wenatchee: Dear goodness - the endless skies and the bluest lakes.

Deception Pass: The ocean that swirls in mysterious layers
 

Seattle Waterfront 

Portland Japanese Garden:


Mt Helen: The Volcano that blew its top ( the legend goes she was jealous of her man Mt Rainier who had another woman – another mountain whose name I forget- Surely must have been a legend created by a man.) 

 

2020 lifestyles

Guys – in the past two years of being in Microsoft – I have gained an enormous amount of weight and lost a ton of fitness

I have kept putting things off for when I have more time.

But I have come to realize that this messy, busy, beautiful life is not going to calm down

That I need to make a real change and invest in my health and energy without waiting for the right time

Since I am turning 40, I have decided that this will be my birthday present

So this is it - guys I am doing that crazy program where you eat crazy things and work out crazily.

Wish me luck and hope that you see less of me in my photos in the Fall and Winter

 

Monday, August 4, 2014

4 weekends with Guests and a Wedding


My dear readers

 

If you have been wondering where I have been – I have been busy with guests this summer

 

4 weekends with Guests

 

DH and I learned the following rules after running the A& K B&B

 

  1. Meeting different guests show you all the different people you have been over the years- I dont think I have changed too much - everyone assured us we were just the same ( only fatter) 
  2. Don't make too much food unless you know exactly what your guests like  -- we made a lot of food that we ended up being wasted
  3. You can be blunt – these are your close friends. One day when everyone rushed into the kitchen to help clear up – DH just told them firmly to put all the plates in the counter and leave it for me as that is what I prefer. I could have hugged him – I was that grateful.( It is one of the most annoying experiences of my life with 2 people standing in the tiny kitchen- emptying the dishwasher and asking me questions at me as to where each cup and plate and spoon should go)
  4. R does really well with guests (MUCH better than I expected) but he is growing up.Still its important to give him some downtime. 
  5. He and I still need down time – DH somehow does not. On sightseeing days he would just take them by himself and I and R would stay at home
  6. Our guests were hassle free. These are all people with multiple servants at home. But they soon saw that DH and I were the butler and maid respectively so the all pitched in and cooked and cleaned and sometimes DH and I would eat a meal where we had made nothing  

Here are all the guests who were parts of our lives over the years 

From when DH was in school in 1970's  these guys stopped in and they were running a biking tour for kids

 


From when DH was an engineer  and was dating someone else


From when DH and I did a Forestry internship - Sambalpur in Orissa in 1996 and our team was kicked out of the Forestry guest house( place were govt. officials stay and sometimes poor interns are allowed to stay for free as well ) and an alum who had never met us – offered us a place to stay for 10 days –

 Now 18 years later he lives in Texas and  N has become like a brother to me and we are super close to his family- I really love his wife and am amazed by the pure acceptance that R gets with their family. Imagine we would never have met had we not been kicked out of the Guest House 



 

From when DH and I just met and we were studying  Forestry  in 1995in a small town in Bhopal – I was 20 when I met DH and I met and we used to live on Instant Noodles( Maggie was the Indian brand ) and D& P  became really close to us - DH and D ( below) also went to boarding school together.

They met when they were 8/9 and below are there two sons aged 8/ 9 almost  4 decades  later.

 



 

Work

A couple of weeks ago,  I spoke to my dear friend from my past job – he asked if I could still come back if they created my dream job.

I was surprised to realize that the answer was No

When did this change happen – when did I start to feel like Microsoft was home? 

Things are not any less crazier ( in fact if you read the papers you would know just how crazy they have been)

It's not just that I have adapted to Microsoft – its also that I am still managing to do things "my way "( touchy feely way) and that Microsoft seems to be giving a lot of importance to the soft skills side .

For instance -the other day I had a team off site and did things in a completely Bush way – example one of our exercises was to share something that no- one would guess.

We learned a lot of interesting things about each other – example someone shared that they women was an Israel soldier and a professional athlete, One very proper person said that he had started out as a professional DJ. 

For me it was that all the major decisions in my life have been on impulse- marrying DH( we literally fell in love at first sight and decided to get married the first week of being together – despite having next to nothing in common), choosing MR as a career, moving to America, coming to Bush, coming to Microsoft

 

R and imagination

R finally has real imagination – real bonafide imagination.

This is more than just the recreating of scenes which he still does. 

For instance, he has been reading a book called "caps for sale" – a story about a peddler who stacks a bunch of caps on his head to sell them.


Now of course he has to stack the caps on his own and my head 

We look like fools I can tell you . But I am so grateful that R is showing SO much imagination – that I do not care one tiny bit

Plus there is  real imaginationblooming.

Nowadays when he tells me to make something imaginary go "higher higher up" he looks at the imaginary object in the sky and I know he can see it

God

As we have had so many visitors – inevitable the question of faith has come up umpteen times.

I will confess that my child have two life altering diagnoses before turning 9 have made me want to ask god – why my child?

Here are the various bits of advice
  1. Visit your family deity and ask for help
  2. Go to a gurudwara – but always tell God that you accept whatever god has in store for you
  3. MIL, who is a super practical person had a long discussion with us on spirituality. MIL was talking about how in her cancer days – she had been feeling completely broken down and she decided to talk to God without any specific prayer. She had felt something physical rise within her and felt a connection to God and then she had just calmly surrendered to whatever would happen. In Christian literature this would probably be called "grace". In Hinduism they refer to this as the rise of the "Kundalini". And she never felt sick again during the chemo etc. She has been cancer free for 13 years
The god platitudes (god loves you more – so has given you extra trouble.. your child is just suffering from evil deeds of past life) give me the hives.

But faith feels good. 

While I acknowledge all the anger of  these past couple of years

I also know that I want to believe and that the two qualities of "acceptance" and hope that faith can give you are beautiful things.

My sister

Dear readers, do you know how close I am to my sister? 

 She also writes(infrequently) in  this cute blog

My dad, mum, sister and I are on an email thread that we all respond to - so on a normal day - I get at least 3 emails from them

She has moved to Dehradun- which is a small town in Uttaranchal. 

This is the place where DH is from. MIL and SIL live there now in a gorgeous house.

And coincidentally my sister and I were also both born in Dehradun  ( though DH and I would not meet for 20 years)

Now  that she is in Dehradun and going to all these places that I used to go to - I feel more incredibly nostalgic than ever 

I feel so nostalgic for the days when my niece was still a toddler ( she is now in college)  we were buying her  ladybug books from the stationary shop ( uniquitoud stores that sell books as well as school  and office supplies)  – I can see it in my mind's eye like it was yesterday and I right there in that little market behind our house


A wedding  

Today we went for KS's wedding – R was  so excited.

We dressed up to the 9's and discouraged R's plan to wear PJ's



We love Miss KS-   Alas she is leaving us because she is getting married and moving for her husband's job

She send me this special note a couple of weeks ago. Read it and you will know why she is so special to us 

About 2 weeks ago I wrote on his white board. "R I have something I need to ask you." He looked up at me. "I am getting married soon and I wanted to know if you want to come?" As he I watched his eyes read each word he started to smile. He took my pen and wrote in big letters "YES". Then I wrote something else "After my wedding R, I have to move away."  I watched again as his eyes skipped past each word. He looked up, clearly confused. I then wrote, "I am moving to San Diego on August 15th." He looked down and then grabbed the eraser and erased what I wrote. I left it at that, days went by and I would check his search history and find things like San Diego, hotels San Diego, and San Francisco. A year ago I was traveling a bit and would frequent San Francisco, he wouldn't see me for a few days but I would always return. I wondered if he thought I would come back like I did before. When his parents found someone who I could train to work in my place, I think he finally understood I was actually leaving. Tomorrow is the first day of the new therapists training with me, and although I was anxious about having to train someone I hadn't said much about it to R. Today R, was crying; I couldn't figure out what was up, at first I thought he was just trying to waste time because he was bored with division, but something just felt different. So I wrote on his board "Why are you upset" I handed him the pen and he wrote "because linsy is coming". It hit me Lindsay the new ABA therapist was coming tomorrow and he understood she was going to be taking my place. I wrote "do you want her to come" he looked down; then I wrote "Why are you sad that Lindsay is coming?" He held the pen in his hand for a few seconds wrote the word "because" and looked up at me, then continued to write "Alice the Camel." ----to anyone else this would have made no sense; but to me "Alice the Camel" is a joke we have about a song. He plays the song and giggles, waits for me to smile at him, I will start singing, he then hugs me, smells my hair, and starts doing his work. R, in his own way was telling me that he was sad I was leaving, I started to tear up he looked up at me, climbed onto my lap, and hugged me so tight. 

On her wedding -he was so a little sad when the ceremony was going on  without including him 
He told me loudly to "tell Miss KS that he wants to be in the show"

Of course I did not - as the show was her wedding ceremony!!

He sat there looking sad 
Even though we made a fuss of him


Until she came down the stairs and walked towards the audience. Then R rushed forward to take her picture.

She immediately stopped  and came to hug him. But he pushed her away so he could look at her and take pictures of her looking so beautiful 



Many of her  family recognized him as she has been telling them stories about him and showing them pictures  
Really while its been a very hectic summer - its also been a  great one. 

We are so blessed to have all these wonderful people in our lives 

Dear readers- here is what July was like for me 

I have to be up at 6 for a conference call  and yet I am so glad that I took the time to write down this long ramble 

Promise to come visit your blogs soon 

Good night 

Thursday, June 5, 2014

The Start of Summer in Seattle

Dear readers

May is the first month in the days since the blog started that I have not written at all

Not just me but all my autism friends – whether it be Julie, Four sea stars, Sturlungi, Once upon, Lynn Hudoba  and so many more

It’s as though we have made a collective decision to do other things

We worry about having said too much

Sometimes we have said it all and we have nothing more to say.

And sometimes life gets in the way

But blogging for me is as much a connection with you, as it’s a connection to me.

More, it’s a connection to the self that I want to be.

It’s a moment to stop and think about my life and where I am going.

Where is my energy, where is my focus?

So I don’t intend to stop writing anytime son

Thank you for reading and I promise to keep writing.

Going out

We took a day trip to Deception Pass and the Tulip festival in Skagit Valley. You guys it’s so beautiful. 

While these past almost 2 years now – have been some of the most stressful years of my life – a huge compensating factor has been the sheer beauty of this part of America

I will say no more and just let the pictures do the talking






Reclaiming weekends

Work is again encroaching into my personal life.  This is like the weeds that take over your life as soon as you stop weeding them out.

I have to do all the disciplined things again – turn my email off on the weekend – 45-50 hour intense work week is enough.

Some days I am so bedraggled after having been in meetings for 9 hours straight – I am just completely depleted and all I can do is just be.

Still I do the little things. I pause myself from getting out of bed instantly in the mornings – on Saturdays and Sundays-

 I bring in Nespressos for DH and me and we all sit together in this little love nest pushing away the hurry of the day 


Isn't the difficult world so much easier to face when you ease into it so gently?

I read happy books like the Harry Potter series, Merry Hall (Beverly Nichols)- (this book is in the 1940's and he is in the closet - a fact that is so obvious when he writes about how repelled he is by women's advances. But its apparently not obvious to these women) and find myself reverting to more gentler ways of being

We lounge in our hammocks
DH and I take long walks in the trails behind our house


Whenever we can - I find time for myself and nature 


Getting organized

DH and I are finally getting into spring cleaning – 

I have taken away about a 1000 books from R’s playroom that are the combination of not being loved nor being appropriate

R’s progress

In April we get notes from his teachers  saying he is not very social and that he will frequently go off topic completely – I am very upset.

DH – ever practical - works out some strategies with the teacher and he is doing so much better.

I am often reinforced in my belief as to how unsuitable school is for a kid like R.

 That he is either stuck “counting leaves” with all special needs lumped into one. OR he has to work with the very social special needs kids.

 Where is the child with classic autism and academic potential to go?

If we could start over, there are three things I would do differently – start speech therapy earlier, not send him to daycare and have a home based program for most of the day. We always had a home-based program but it was all after school and he was spending so much time and energy in school that there was not much left over for the rest.

I go for a meeting with his school teachers.

Fortuitously, his teachers have had days with him just prior to the school meeting where the other kids in the groups have not turned up. They have gotten to see a very different R – regulated, interactive and joyful
As such their impression of him is very different than it was before and they now think that he needs to be paired up with peer-mentors – not other kids with special needs – something we have been wanting to do anyway

I have been stressed about this meeting and have taken cookie brownies ( have you ever made these guys? So awesome) 

His center where he spends most of his time he is doing very well- lots of challenges in Reading comprehension but doing very well in Math and Science

Other kids 

DH and I always said that R was never interested in other kids. But there is a certain change in this  that we are noticing 

Play dates with other kids with Autism 

In R's social skills class there is another child whose parents we really like and so we decide to do a play date - This child is very sweet and they have the funniest interactions - kind of like a relay race. 

S will leave a bucket in the sand. Then he will move away.

R will then play with the bucket

And so on 

These funny little interactions are clearly enjoyable to both as the next two weeks they ask to play with each other again

He is suddenly into other kids as well - DH's engineering friends come for a trip to India and R is so enamored by "the girl". He follows her everywhere, her picture is now his screensaver and he tries to get me to mix some Sprite in her glass of water so she can have the little cocktail that is R's favorite thing 

 Ditto  our neighbors- on both sides of our house - we have found really accepting pleasant people who are completely unfazed by R walking into their garages to take a closer look at their cases of Coca Cola.R always takes pics of their kids as well.


Floortime and Autism 

What about Floortime? Well I would tell you how he was doing if there really was a lick’s worth of Floortime I was doing.

I am just too tired from work and now in the 7th year of autism and the second year of Crohn’s some of my energy has fizzled out.

I just want to be mom.

And sometimes I just want to be.

Most days though we have a fairly interactive routine- so very much a floortime lifestyle.

Usually when I come home and the rain has held off - R is waiting with his picnic bag.

We take cupcake for R and small Sprite can and a bottle of Talking Rain (club soda) for me.

On evenings like this I get little gems from R.

We were drinking our sodas

He said “Sprite has 90 calories” and then he asked me “how many calories does Talking rain have”

I am  so proud

We make boats with a soap that he was carrying in the picnic basket. 

With a leaf and twig as mast. We pretend things are other things and act our little scenes - a bottle cap will become a hot air balloon ( my idea ). But then the doll will fly away (r's idea) 

 Even though his pretend play is primitive - it is very much present!

A high school student who is doing a project on R comes by to interview us. She is very impressed with us( or atleast very polite :-) ). 

As we talk to her, I think how much more we know than before.

Example - I used to think the question was about method -  what should we do Floortime or ABA or Sonrise. But I think just as important  as the  "what" question is the "who" question.

If I had an autism haiku  it would be 

Find the right people
Let them spend the right amount of time 
Make sure your child is happy

We are all sick today. 

And yet  I write this in my silent house when all the chores are done , the dishwasher and washing machine are set on their timers and my two sweets are tucked in bed with their cough drops and Vicks, all I feel is the blessedness of life when I stop rushing.

The pleasure of sitting down with a cup of peppermint tea and talking to you dear reader.

As though time was endless and I had all of eternity to watch each thought  come to life on the screen.

 I think of what his teacher told me " he is a happy little guy.. but the world is just going by too fast for him"

And I think, as much as we can, as long as we can we will slow things down.

You better slow down, don’t dance so fast,
Time is short, the music won’t last

Floortime Lite Mama

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