6 Autism things I don’t do no more

Life is the ultimate transformative experience. Over time you find yourself caring about different things .I am on Hopeful Parents today talking about 6 autism things, I dont do anymore. If you hate to click on links- the full post is below

6 years ago when R was first diagnosed, DH and I had endless passion about so many Autism things. I focused so much on a to-do list. If I could have looked ahead I think I would have focused also on a not-to- do list.

Here are 6 things that I used to do a lot and I don't anymore.

First, the Debates of Autism: 

I just don’t have the same energy around  Autism controversy like I used to. Case in point- when Susan White of Autism speaks did her dramatic speech (or was it PR release?) and Facebook caught fire –I was about to write a POV. But then.... my Surface keyboard was lying on the chair next to the bed. And.... I was too lazy to get out of bed. So I contended myself with just tapping on “like” on someone whose POV approximated mine. Please don’t be offended if you are passionate about the debates. The debates and the issues are important. Of course they are. But I no longer feel compelled to add my voice.

Second,  forcing you to be optimistic. 

I am super optimistic and work hard to be that way. But I realize that that is not everybody’s way. If venting helps you- vent away. If happiness feels irrelevant – so be it.

Third, thinking people with autism have the blueprint on my child:

Autistic adults provide a unique perspective – make us think of things that we would not have thought of. But I no longer think that an autistic adult knows more about my son than I do. Would an Indian stranger know more about me than my black BFF?I don’t think so!

Fourth,no more FOMO:

The other day, I had a chance to listen to Temple Grandin. Those of you who follow my blog know that I am a huge fan. But as I heard her speak – I felt like I had heard the every bit of the speech before. It’s like this with many trainings and books. It was useful in the early years. Not just for learning, but also my need to do something. I had a massive version of FOMO – fear of missing out. I felt that without doing a training etc. we would be missing out something crucial for R. But now mostly we seek less, do more.

Sixth, thinking I have the answers or can find them if I look hard enough :

 We have read so much, talked to so many specialists, mete so many parents and autistic people. Autism is still a mystery. The one thing I know, is that I don’t know. Now when newly diagnosed parents ask about things like DAN – I just say – “use good sense"

Finally, Autism and Identity:

 I think I am going to wait to see how R feels about his Autism without assuming that he will

a.     Be ashamed of it and want to hide it

b.     Think it’s a part of his identity or even be all about autism pride.

My hunch is that he will be matter-of-fact. Since DH and I are very matter-of-fact. I showed him my blog the other day and asked him if he felt okay about me writing about our family and he said he said was totally okay! The question, whether he is who he is, because of his autism or in spite of it is irrelevant

 

There are things I continue to care about and feel passionately towards regarding  autism, even after all these years and I will tell you about those in another post some day.

Back in the Smoky Mountains and other things

 We need to go back for a visit to list our home with a new broker as its on the market now for a year.

The market is slow and our realtor was not very good

DH and I in some ways still think of the smoky mountains as home. It’s the longest time – a decade – that either of us has ever spend in a place

The Smoky Mountains dressed up in all their autumn finery and dear reader as I write these words, I ache for my cabin in the woods.

Listing our house with a new broker

R refuses to go inside.

 Later as he looks at the picture of what used to be our bedroom – he says “no furniture” “the house is empty” and that these pictures make him sad.

Meeting old friends

One of the best parts of Knoxville was meeting our old friends. I tell them that one day I will definitely come back and work again in my beloved past company Bush’s Beans.

Another joy was meeting R’s Therapists.

 These women have known R since he was 2 years old and now he has turned 9.

OMG he is so happy to see them and they are so happy to see him.

He is always weird and distant and hides behind DH and me for the first 10- 15 minutes but then he is all kisses and hugs.

They started out as therapists but now they feel like family.

Magical Miss Gypsi takes R out for his first haircut in a salon ever.

 Miss Sadie and Kristen take him out at the ubiquitous McDonalds.

They have R’s heart and he has theirs and it just feels so warm and comfortable being back with these women that love him

 The Cabin

Finally I come to the cabin.

I simply cannot tell you how magical it is to spend the weekend there.

Its currently on a rental program and so its perfectly clean and well stocked. 

On the first day I wake  up today so sleepy as I had not slept well the whole of the week before this 

While the room is full of  sunlight spilling everywhere, I  would not have woken up either unless R  had not come to snuggle which now that he is 65 pounds is quite violent.

I wake up in the room of happiness - which is what I call the room at the top of this cabin.

This is the smallest bedroom in this house and did not have a shower( just a bath tub) so the realtor called it the "spare room". 

But as soon as I saw it with its giant windows and slanting multiple rooves - I knew that we would never sleep anywhere else . 

DH eventually installed a shower in this bathroom and we moved in there permanently.

We take endless walks in the woods. 

The woods are full of this special amber light.

This is the special quality that the light has here at this time of the year since the sunlight is filtered through the orange and yellow leaves.

I was so much at peace here once and my heart aches for that old lost familiar feeling.

Is happiness a place? 

Despite the golden light and know its more than the place. 

For soon these leaves will fall and then the forest will be barren and waiting for Spring.

But I would always find new iconic moments.

While things are getting better and better still have not come to that happy joyful place of peace.

We do all the things in Knoxville  that we have missed - I get my hair cut from the charming Venezuelan lady who dismisses all my sentimentality and says I am "lucky to get out from this sleepy place"

She cuts my hair like only she can( with a razor not a scissor) !!

We have tea with our neighbours.

 Lucy is a very charming person and when you sit drinking tea with her you find yourself slowing down 

Lucy's daughter has just got married very happily and they are super happy.Their step grand son has aspergers and they feel really equipped to understand him because of R

We also hang our with our other neighbors who urge us to return to Knoxville.

R cries the last night - when we go to eat at an Italian place we love - and says that he is really really sad ( oh how I love that he types up his feelings for us now )

Though like all small children, he is swiftly distracted by some pizza dough that the server gives us for him to knead into a pizza ( she is coincidentally training to be an OT)

Its these casual kindnesses of Southerners that makes me love them.

For it seems that everywhere we go there is that peculiar acceptance of Autism that is relaxed and casual.

Readers- its with such a pang that we leave.

Though at the airport I meet a person who tells me that it takes 3 years to start thinking of a new place as home !

Where is home?

As the plane lands in Seattle-Tacoma airport -it also quixotically feels like coming home.

As we enter the house - messy  -as we had left in a hurry ( as per usual) - I feel a sense of setting down

R's birthday 

The next weekend is R's birthday - Can you believe he is 9 years old

When did this tiny little baby get to be 9 ?

As per usual his list for his birthday is simple. he wants

• Double tree by Hilton
• Hugs 
• Bed time with Mama 

Wee  have booked a night in Olympia so we will also get to see Rachel and Mr daddy - who have promised to drive down

We plan to meet in Vic's Pizzeria-

A friend who lived in Seattle told me about the "best pizza" you will every eat.

You guys - its a regular place in a strip mall.

But I have never eated pizza like this - Just Stunning

As always meeting Rach and Mr Daddy and Itty is amazing. We cannot stop talking and we make them promise to come spend the day with us

When I see children like Itty - who are so nice and accepting of R  - it really feels good

9 years old 

DH put the hammer down today and made sure we sort through a bunch of "crap that you and your son have choked up the box room with"

As I start putting R's little baby clothes today - all the things that I have stored up - even his hospital tag - I just cry buckets

The day I put that hospital tag on my hand - I had no idea how difficult and lovely  life would be.

All the hardness and difficulty I thought at that time was about sleepless nights and diapers and all the things all moms in hospital think about

I never thought about things like Autism and Crohns

But you guys I also had no idea how awesome it would be to be R's mom.

That is the funny thing about life.

You think about all the things you want and then you look back at yourself and think that you did not know what the heck you were talking about

I am so sorry that I have not been around your blogs at all these past few weeks. As you can see its been a whirlwind.

Thanks for stopping by and I promise to come see you soon too .

Days in my life - The second week of October

Dear reader, 

I am getting once again into the habit of writing down a little bit each night as the day is done. 

The idea is to reflect on each day and enjoy it both by thinking about it consciously and also saving it away for a later read. 

Those of you who journal regularly know the delicious pleasure of wondering well what you were  doing on October 2009 and then reliving that month 4 years ago at the click of a button.


Saturday

I look at the weather forecast as soon as I wake up and I am so excited that the next 10 days are sunny. 

However clearly the sky does not have the app as the sky is grey and its as emerald green as ever.

DH and I are both sick. 

He is more so .

I make reproachful noises, as I am the one who has to go down to make tea. (ginger tea- made with the special leaves that Sandra gave us which you can buy only in India - my solution for all ails)

We loll about in bed and face time with R's grandma who is so happy to see him.

I try to get him to read  a poem to her which he does lackadaisically!

Then its time to rush.

Even though R's social skills class is at 11.30  -invariably our lolling-about-ways mean that its always a rush to get there.

His social skills class is in a Farm where there is a fair on.

DH and I go to shop for groceries - he is so exhausted that he naps in the car while I go to Walmart and Target.

Oh how I loathe grocery shopping!

Then we get home. 

I make lunch with the air of a martyr and make only healthy food ( a stir fry salad- no meat) 

This is my silent revenge

We relax but then R starts to whine about going to the park. 

The park is great.

So lovely and not crowded at all.

One reason why I love the fall.

I am finding my smart phone irresistible and make a mental note to put it down more.

I ask R "Say anything to me "

R obligingly doles out a fact " the lake is the duck's habitat"

(He is reading about ecosystems and his favorite joke is to tell me " the lake is saltwater". What he lacks in wit, he makes up in enthusiasm)

The ducks are approaching us -fearless and ferocious

I ask R - "What do the ducks want?"

"They want my cupcake" - he answers fearfully.

As soon as we are back - he wants to take picture of the elevator at the Sports club

We do our usual shameful routine of going to the sports club - but not exercising like the huffing and puffing people virtuously doing their hamster routines on the treadmill . 

Instead we take pics of the elevator and buy his Giant cookie (I note that the nutrition facts say that this one cookie has two servings )

Then R quickly remembers that he was a very good boy in Miss Rocco's class and his Dad had promised him a restaurant meal .

So off we go to Canyons. I don't know if it is because we are tired - but its extra loud and noisy and exhausting.

R LOVES eating out and he is really easy to take to retsuatrnsts ( as long as they have either fried chicken or pizza)

We are so tired by the time we get back that its just some TV (Elementary) some grapes

And time for Bed.

We choose a letter( P ) and read 2 words with P

Power and Present. I try to describe what Power is - but R chimes in " The power is off" To tell me he knows about electricity

We read "The Tiger" by William Blake. 

I think its a wonderful poem but the language has too many oddities for an autistic child.

I ask R what he thinks William Blake feels about the tiger.

"He likes it" R answers simply

SUNDAY

We cook and rest all day and watch movies.

Its a perfect Sunday - every week should have a day like this

R's community trip is to the library , they are working on maps.

Mrs. D comes back shocked at how amazing his sense of direction and visual spatial reasoning is - he can walk through a room and point out exactly where everything is on a handwritten map- example exact spot  they parked in.

"I keep thinking its dumb luck and he kept proving me wrong" she says 

We watch a lovely movie called Talaash - its made by one of my favorite actors directors Amir Khan - 

I have been avoiding this movie as its about a couple whose 8 year old son dies by drowning.

One snippet I have seen of this movie - where the family is lolling about in the morning has convinced me that its so like us and since the child dies I do not want to see it.

But OMG the movie is wonderful .( I thought it was about kidnapping and its not - thank goodness) 

We also watch a small bit of a terrible movie where a bra less Kiera Knightley and her husband are each on the verge of having affairs.

Whether they actually do have the affair's or not - we shall never find out as its too incredibly boring. 

I don't understand why movies and literature have made so much of infidelity. 

Its terribly boring as each time its dealt with the usual cliches.(irresistible passion/bored with mundane married life etc)

In the night R and I write  a journal. he tries to write just the facts ( we drank sprite ) and I keep trying to intersperse tidbits of emotional things ( you were upset because you forgot to bring the green straw)

Monday

A great book I am reading is called The happiness advantage.See his amazing Ted Talks here.

Its basic premise that you think that once good things happen to you - you will be happy.

But instead,  if you start with Happiness -its an advantage in life as it makes you more predisposed to success.

It put me in the mood for a good day - which I sorely needed as it was an emotional day at work with some re-orgs.

In the evening some of my friends came over for Margaritas ( made by DH ) and snacks and we sat around the dining table and relaxed and chatted.

R came upstairs - I had already primed him that we would not be going to the park that day.

But he wanted to make sure that our guests did not spend the night so he told them that they should "go far away on Monday " and that he would set the timer for 90 minutes.

When the timer went off he came and urged our guests to leave .

Thankfully they are good friends and did not mind his encouraging pushes to the door to get things going.

These are terrible manners but I am so touched by the honesty of R .

At night he is in tears as he reconciled himself to the reality of not having had the indoor picnic(a compromise picnic where R eats his junk food inside the house)

Sadly indoor picnic has been missed  because my alcohol tolerance is very low and I am tipsy after a single margarita !!

He draws this on my Surface

We learned 3 new words from the dictionary .This is our tradition now- our words were daughter , danger and delicious

We had eaten too many snacks so I came downstairs and instead of dinner I gave DH what I call the low blood pressure cocktail - oatmeal + walnuts+ low fat milk.

We see Mentalist and How I met your mother and now its time to go to bed

Tuesday 

Yesterday when R was upset about the park I had promised to take him to two picnics today

Sadly he has great memory and remembers my promise and after a 10  hour work day I find that I have to go to 2 parks

Oh well – he is so tired when he has to write his journal – he falls asleep halfway through a sentence. 

Today I went to Idylwood park and Ardmore….

Wenesday 

Today I have 11 meetings. 

Then I come home and  R is squeaking for snacks and entertainment.

He wants to go to Archstone Apartment. I think it is a great idea to learn about maps - so we google it and get directions . 

As I turn left on 40th street - R protests from the back " not that way .. another way" so I know we were not going to the place he was dreaming of

I let him guide me and we reach Archstone Campus ( 2 places with the same name - how ridiculous)


I am wondering why he wanted to go there and then suddenly the horror dawns on me - he wants to take pictures of all the alphabets which is how the apartments are labeled.

As we drive back I tell him that I understand  how much he likes  alphabets and numbers but now

that he is almost 9 years old it was time to do things like multiplication and division.

He says  sadly "They are for babies"

I feel bad for him . 

There are so many things he likes to do( like snuggling , Baby Einstein videos) that are for babies. We wrote a nice journal today.

I help  him with the grammar in the beginning but then he grabs the iPad from me .

I am amused that he corrected all my spellings - even a shopping list he saw in my notes - t  I had written "Sushi" - which is a word he does not know - so he thought of the closest approximation and wrote it "Susie".

Too funny

Anyway here is the journal


R'sjournal

Today I was very sleepy
I went to miss Marla...
I went to work with miss Kate . Miss Kate did not draw Mrs claus Then I ate
chicken After that, I went to miss Angie school. I played wii Then mama came
home from officer in Mama and I went to Archstone. The first one was not the
right one.
We drove back to idylwood park.
On the way we saw the Archstone that I wanted to go to.
We drove to the Archstone. We took a photo of the letter B.
Then we go home Then we fell the floor
We drink sprite We brush her teeth We rinse your mouth then we washed face
and hands We sleep mother

Thursday 

I am too tired to write tonight as it was a long day so here is R's journal instead. Iam in parenthesis

Thursday 

Today I worked with miss Brittany. I pushed and spun on the swing.
I talked about yesterday.
Then we played on the iPad.
Then we talked about what I did.
Then I ate pizza
Then mama came home ( BTW I came home so that DH and I could go to the disability fair that was being held by Microsoft - but I had  to tell R that I was taking DH to get an injection. This  did not deter him and he is willing to get an injection for the sake of being with us) .
Then I worked with Miss Kate Then we ate chicken.
Then we go to the center. I worked with josh.
Then I came home.
Then mama came home.then we went to aegis( BTW this is a memory care place -
that is close to us - people with Alzheimer's - the caregivers there were
very sweet and showed us all around and even gave R chocolate ) . we saw
old people there.
I saw a canoe.( this was a fake camp are they had created for their
residents - it was indoors but they made it look just like a camp ) 

I went to idylwood park.we saw geese. 

A woman came to talk to us.mama and the woman talked about the moon. The woman had a boy and a baby  ( this I had to interrogate him on as he usually sees the world while ignoring all
the random people in it ) We came home ate dinner and played wii. And  then mama did treadmill . We did sleep mother.
It was a good day

Friday 

As you know he is going to the school near by for social group. 

I went to meet to get the IEP signed. His teacher says he is ignoring everyone there

In the social group he
• Slouches
• Ignores
• Lack of response discourages peers from responding
• He does not acknowledge peers by name 

I had taken fresh hot buttery muffins and since the meeting was at 7.30 am on a cold Fall day - and the muffins were just out of the oven- they were much appreciated. 

I also show them some of the things he is doing at home. They are good people and we brainstorm some ideas.

As I do his bedtime routine at the end of a lovely week I reflect on how humbling life is . 

While R makes so much progress and is in so many ways a dream child - his social limitations are profound 

DH and I sit in bed in our down comforter and chat about the balance of pushing and accepting. 

Tomorrow is another day. 

This weekend we meet with our home therapy group and I know we will find some ways to move onwards and forward.

Always onward and forward.

Right upward the oak-tree is growing,
    Forth-waving its leaves in the sun,
And deep in the green earth is sowing
    The seed of a forest to come.

Fall in Seattle

The unbelievably glorious summer days are over.

Fall has begun.

All these years in Tennessee – fall was my favorite season but the summers of the Pacific Northwest are spectacular and have almost replaced Fall as my favorite.

I and DH put out all our Fall decorations. 

There is something so settling about welcoming season.

The hybrid homeschool

This is the first summer that I am not desolate when its over (though I will miss the lovely blue skies).

The reason is that R is not going to regular school this fall.

 He goes to our neighborhood school for some speech therapy and social therapy but the rest of the week he has a combo of: 

• ·       ABA based school
• ·       Homeschool
• ·       ST+ OT
• ·       Community trips (more in this below)
• ·       Social skills

He works about 40-50 hours a week (pretty hard I think).

But he has so much to learn and we keep it fun.

DH and I are trying to create a thread of steel through everything we are learning. 

So ABA and homeschool is about ecosystems- that is the kind of books we look at in the library.

Community trips

His Sunday Therapist’s job is an ABA therapist and her job is simply to take him to a field trip and write an essay on the field trip. 

This then is linked back to his regular school curriculum. 

For example, last  Saturday his teacher took him to the police station and the pet store

They are so nice to him at the police station

Since the station is empty – officer Rebeca lets him sit inside a squad car and even puts the lights on for him

The second trip is to the fish store -  they have  the fish neatly labeled as freshwater fish and salt water fish. 

There is nothing that R loves more than a well labeled system.

Evening Rituals  

R and I of course continue with our weekend routines of going to the park and having a picnic.

He is very jealous of our time here and does not allow me to talk to people.

He has many tricks to enable this. For instance if we are on the swing, he will quickly instruct me to count. If we are out and about he will run to a faraway picnic bench.

DH has been exiled from the park outing- owing to the fact that one day he came with us and then teased R by taking his baton and walking off with it.

 R does not understand teasing at all and so this family ritual is over

A pity as I used to love the time we had all three of us – me and DH with our tidbits of grapes and cheese and R with his bounty of junk food.

There is always something interesting to look at in the park.

I meet many foreigners in the park. I am very interested in what they do to strike up a conversation.

Indian people invariably ask – “do you live close by- which road”

This is a quick classification to figure out whether you live in a house(which means you have arrived) or in an Apartment( which means not yet)

The next question is where you work. 

For white people – these questions would be quite stalkerish but Indians always like to classify people and I am never offended.

Some of the women look lonely. 

The life of an immigrant can be very tough. Especially if you are not too close to your husband. 

As arranged marriage is quite common in India still and so you can get married to someone you barely know and move to a brand new country.

DH and I are super close and are able to go anywhere as we are our own ecosystem and never feel lonely as we always have each other to talk to

I chatted with one of the ladies yesterday (I see her every day and always thought she was aloof but turns out she is very eager to talk and is just shy)

She said that it was so grey every day that she just has to come out and not be stuck in the house.

She said apologetically that she was an engineer but now "just a homemaker".

I tear up a little at this (there is nothing to apologize for being a homemaker of course – but to feel that whatever you are doing is less than what you are supposed to is a sad feeling to have. I am very familiar with this feeling as I felt guilty for a long time after R’s diagnosis for being a working mom.)

One  days there is a silent Japanese lady fishing – R is enthralled at all the fish in her bucket.(though he is very la-di-da and uninterested in the fishing rod that DH has bought for him)

There are some couples who are so bundled up with barely their noses showing though its only 60 degrees.

We feed the ducks - who recognize us as people who feed them and are getting to be quite obnoxious in their demands for food and are oblivious to my go aways

Picture taken by R 

Letters writing rituals  

My father, sister and I have started an email chain.

We write to each other everyday.

Getting an email everyday is such a treat as I get to know the little bits and pieces that otherwise  no one thinks to share. 

For instance, this little snippet from my sister's life , my nephew – whose English is not so good is asked to make sentences and here is what he makes

l. Horror -This movie is horror
2. Chilly - This water is full of chilly and ice

I smile over these details all day and it makes me feel so close to my family though we meet for 10 days every other year.

Bed Time Rituals

R and I have started a routine of reading poems at bed time. I think he loves the rhythm in rhymes.

It also helps us have little conversations

The other day, we are reading about loneliness and I wondered if he knew the word. Here is what we discuss.

Me : R do you ever feel lonely

R : Yes

Me: What kind of feeling is it

R : Very sad

Me: What do you do when you feel lonely

R : We can go to Chloes house ( the recent vacation in Canada – where we all did nothing but eat and relax and play video games and chat )

An Autism Event

It seems that everywhere you turn in Seattle – there is someone with Autism. 

Microsofties – particularly seem to have a lot of autistic children ( they says Engineers have a higher chance of having kids with autism)

One of the charity events this year is a Zumba class.

Lo and behold – when I get to the event – the class is being taught by an autistic girl. 

She is obviously autistic ( in the middle) but teaches the class really well. She is also going to college and studying to be a radiologist.

I Zumba through my tears and the feeling comes over me  for the first time this year that I am exactly where I should be.

(For my heart is still in Knoxville – the sweet kind company I worked for, the slow pace of life- and I dream of it often. The dreams are so real- full color and I wake up with dismay in the emerald-grey present)

Gratitude Journal

A ritual that DH (reluctantly ) and I have started what I call the gratitude journal.

Every night before sleeping we write down 3 things we are grateful for that day.

It’s a very nice thing – we try to keep it at the small stuff – in the details as the whole point is to focus on the little joys that the day brought

Example one days good things were:

·       Playing with R  -  he pays attention now – Instead of simply lining up the trains by number we read the poem of Henry's ballad. He and I do a little play with the Little Einsteins people

·       Started watching Newsroom - its epic

·       Red grapes from Costco  - was starving  and found a bowl  of washed cut red grapes

·       Had 2 meetings  while walking

It’s a very nice way to end the day.

DH and I had got into a routine of discussing our to-do list and our worries at bedtime and this is a much better way to end the day.

Its not that things are easier.

All of us are sick – DH especially so with a really bad cold that has left him exhausted. 

Work is as stressful as ever. And R continues to need more than we can give and then some.

But it’s about a shift in focus to the little joys of life

Gratitude is a practice.

Happiness is a verb