Days of my life: A week in March

Here are the bits and pieces of a week in my life

Saturday 

Today it was raining so much.

DH and I went to drop R at Social skills class -one of the things that I love about this class is that  DH and I have 2 hours of “we-time”

We go to Olive garden.

Right next to us were a more successful version of me and R ( Indians: thinner wife, kid that ate everything ).

DH was very upset that they have removed pork from the menu.

Anyone who thinks my husband is not an emotional man should see him when he has expected some pig based materials ( pork/ham/ribs) and then not given them . He grumpily ordered the Italian Sausage thingy and swore (very as-god-is-my-witness,Scarlett O Hara style) to never come to Olive garden again.

At home R locked the bathroom door. One day I locked our bedroom door and R was VERY upset and since then he has been obsessed with locks.

I threatened to not take him to Pro-club.I also asked him to face the wall for 10 minutes quietly - he is so funny and does this so seriously with his timer

Then DH chopped meat and veggies and cooked for the week - basically our lunches and R's dinners

I made

1. Chicken Taco soup ( lunch for me )

2. 3 stirfries/curries - to be eaten with roti for DH’s lunch

3. Kale+ Spinach+ Pepper+ chicken mix that R has for dinner

Then I took R to Pro club where he took pictures of elevators

R bought a massive cookie at the club - its St Patrick’s day here so he found a cookie in the shape of a shamrock – then he and I went and played with a basketball - it’s such a miracle that R can actually catch and throw a ball – for the longest time he just could not .

We played catch for a long time – when I came home I told him – that playing ball with him was the best part of my day – I asked him what the best part of his day was – he looked from his liquid eyes and said “ the best part was the Shamrock cookie"

We see a movie "Stuck in Love" 

I really like Greg Kinnear.

I am listening to "Enjoy every Sandwich” I just loved it.

Just finished "Death of a Perfect Wife" Hamish Macbeth series - oh how I love this series!!

Audio books are a great joy of my life

Sunday 

I woke up to see two large brown liquid eyes staring at me.

He got my Surface and my blue robe for me. R loves mornings where we all snuggle in bed with all our different devices and he wants to activate this as soon as possible

I skyped with my Mummy and my sister and baba -

R said his tummy was hurting. Crohn’s breaks my heart. My sweet child's insides are bleeding.

Today was IKEA day: I have been wanting to buy a bed for R - he has been sleeping on just the frame and the box forever. I really wanted to buy the ones with the storage thing underneath – DH thinks its too much storage(but he does not know that there is no such thing)

IKEA was exhausting. R wanted to go to Smalland ( IKEA play area).

Since his Crohn’s is back slightly, I am nervous to let him go somewhere where he will have to explain to someone about a bathroom and that he needs it urgently. But he was fine.

We browsed and bought steel espresso cups - the bed and some other odds and ends and before you know it was almost 500 dollars.

I consoled DH that at least the meal was free ( IKEA promotion).

But he was quite inconsolable - esp since the couple in front of us had not bought enough to get their meal for free so ran back to get some more items which means we had to stand for a long time.(and I had to listen to DH wonder in whispers as to why people are so stupid- This is a question he asks me many times a day.)

We came back and the sun was shockingly out so I took R to the park - it was so beautiful .

Finally the air is a balmy 50 degrees.

R of course wanted to sit in the most crowded section of the park - while I wanted to go to go to the other side - I asked him WHY he wanted to sit there and he said "because there are rooms of people"

We did jumble words - he said "No scrabble" I countered with "no sprite" At this fearsome threat he agreed to play.

Back home,  I washed all the glass dishes I had got ( this is my new fad - I want to get rid of all the crappy plastic dishes ) 

DH was piously putting together the bed - R had refused to help . 

So as a punishment -DH made him sit on a chair - minus all electronics( oh the Humanity!!!) and watch the boring activity of DH putting together the bed .  R wept and wallowed in self pity .

He mewled that I should come to him  so he could "smell her hair" . 

So R and I  put together a lamp- a very nice lamp and thank goodness I had not bought the awful lamp that he recommended( which when I asked him why - it was "because it was in  baby Wordsworth"

The bed was put together and it looks GREAT I think - R was SUPER excited- he kept running out of the bath tub to monitor DH's progress.

Then I read poems to R while he went to sleep 

He looked so sweet - that I take a photo

R put a hand in front of his face with all the ennui of a star to the fawning paparazzi and said "no photos"

Monday 

 So I never talk about my office days as they will be very boring for you to read 

The week-days - our evenings are mostly - a combination of Park+ TV  +Dinner 

So to the park we went - I find a lot of really close conversations happen when you just happen to chat with the person you meet at the swing. 

I call this the one-swing-stand

Today I meet an Indian woman. She is :

1. Very sweet
2. She is lonely - I have noticed people are very ashamed to admit that they are lonely but when they do they are very relieved. Its like a guilty secret

3. R was quite rude as he wants to be alone with me and said "bye bye " several times to the sweet child who is quite enamored by him 

 later on we went to the far side of the park where he told me "no kisses" and that he was mad at me. This child HATES me talking to someone else. To make things worse I also played jumble words which he calls scrabble. I am on his hit list today for sure 

Tuesday 

 At night we were reading our books - he picked out his giant book of compiled kiddie books that he calls "Harper Collins" book - DH came by for hugs and kisses and asked R what his fave story was -

 R said "Leo the late bloomer".

DH asked him when he plans to bloom?

But we both exchanged a smile at this child who has taught us to enjoy the scenic route.

Wednesday


One more sunny day - So lovely - R and I go again for our picnic and jumble words in the park. 

R has a strict procedure as it relates to  the park - within which he will allow me to do a little play.

I scramble foam letter words and make him unscramble them. 

Now since he will only take one copy of the alphabet, the words cannot be too long as there are not any letters with two copies ( Eg EIGHT is one of the longest words ) I scrambled OGFL and instead of making GOLF as I thought he would, he made FLOG. Isn't that a weird word for children today to use?

R is working really hard and really long hours.I think he must work 8-9 hours every day. I have to say that progress is slow and language comprehension remains the biggest barrier.

Its not that he is not bright or does not have good memory ( he just rattled off our 16 letter alphanumeric wi- fi code that I have maybe said 3-4 times over the past 1.5 years ) 

He wrote it down here 

Or that he cannot think or problem solve (he can when he is focused).

Its just that his intelligence is not accessible in many ways due to language barrier.

Not that intelligence is all that matters

One of my friends who has a son with Downs told me she was always annoyed by the "angels" stereotype.

I never understood it- but now the "intelligence" stereotype with Autism gives me the creeps. As though our children have to compensate in some manner for their disability.

Why can’t they just be? 

Life is not fair- when it takes something from you - it does not always give you something back in return - why pretend it does? 

All that matters is how much we can make of it.

With all his problems, with that profound emotional immaturity, R is quite extraordinary with his immense capacity for love. 

Today I saw him sitting in my closet surrounded by my clothes, burying his face in a scarf of mine. I feel so moved by this little child's tremendous affection

At the end of the day, if this is my lot - I will be grateful for it.


FRIDAY

I have 4 deadlines at work - all in the morning.

I literally do not know how to do so many things all at once. at the same time if someone had told me a year ago that I would be able to be "On" all the time - I would be amazed.

The pace at Microsoft is like no other place I have worked at. I find new folks weeping at the pace and wondering if they will be able to make-it.

We go to the hospital - his numbers are still not great - his extra med just started last week but I want to just cry - why does all this treatment not help him manage his condition fully - why is he so full of auto-immune dysfunction?

Then there is this relentless fatigue - even when I am sleeping 7.5 hours ( a lot for me ) I am just so tired.

As we drove back from the hospital the clouds were gone and the moon was out on the lake. - a truly beautiful moment.
Though it was 9 pm by the time we are back - R still wanted to "have an evening"

So we drank decaff nespresso with some chocolate while R ate some of his dinner while we are "watching TV " and he is "relaxing on the couch"

R is very particular about his iconic moments and making sure he gets them
( there is a lot to learn from this child )

So I in turn had my iconic moments - some lovely things to balance out some irritations. 

So I :
1.clean the kitchens and put in laundry ( on delay start) while listening to a mystery on my phone
2. warm a lavender wheat bag for my back
3. write my diary while drinking peppermint tea


Saturday 

A relentless day of chores - but still pretty good

1. Laundry - 1 load
2. Cooking - Soup, Kadhi, R dinners, 
3. Dishwasher - load- unload - 2 times 
4. Costco - bought allergy free cleaning products for our cleaning lady and detergent. Also loads of fruit and veggies 
5. Take R to park 
6. Walk 
7. Clean Kitchen 
8. Put things away 
9. Soak rice and lentils to make low allergy pancakes for R ( called Dosa) 

I have the fitbit - I love it - everyday this week other than yesterday ( hospital day ) I have done more than 10,000 steps.

I had no idea just how sedentary I had become

Its very hard to do super strict diet so I am just trying to eat healthy - mostly veggies and walk 10k steps everyday

Sunday 

Is a lovely day as we have finished most of the chores yesterday.

I drink Nespresso and skype with my  parents. We watch Elementary and then we go to Spazzo's - for lunch.

We go to the gym - DH exercises while R and I take pictures of the elevator - today we get stuck in the elevator. 

R is very upset. He mewls and climbs into my lap for comfort. here is a picture of us - me trying to be calm and him in a panic.

I am not upset at all  - I secretly hope that this will reduce his obsession with elevators. 

The Gym folks feel very guilty that we were trapped and give R a $25 gift card that he can use to buy their overpriced cookies.

I take a long walk while DH makes turkey kebabs for dinner tomorrow and coq-au- vin for his lunch.

When I come back - R is asleep on the couch - the rain is softly falling and the house is full of the fragrance of the savory treats that DH has been making.

I sit down to write my diary and I think that life is starting to feel good again. 

I still dream of Tennessee and I imagine myself back in the top- room in  our cabin in the smoky mountains - in the room of happiness- surrounded by the sugar maple trees.

But I am also thinking of pleasure of these majestic Douglas firs, the soft rainfall, the grey-green lakes,  the deep  emerald green all around us.

And I am thinking that there is joy to be had anywhere. 

That you can carry your happiness within you.

For wherever you go.. there you are.

Bringing up Baby

When R was a little, he had a onesie with a sign “If only they would stay little”.

This is something that most mothers say.

Little was I to know how much he would like staying little and, if I am to be honest,  how much we would enjoy this childhood unfolding in slow motion

At 9, he has still retain such sweet innocent charm – that people often mistake him for a much younger child

My sister will ask him to “fulfill all his baby jobs and give her flying kisses”, a nurse will giggle indulgently when she sees that R cannot blow his nose, someone will bump into him at the gym and instead of saying “Excuse me” they will give him a hug instead. 

People coo at him, instead of talk to him. He gets more spontaneous hugs and kisses than any 9 year old I know.

In fact , DH is probably the only one, in all of R's world that pushes him to act his age.

Many articles that adult auties write about things they wish we knew about them says how much they hated being “infantilized”.

But R LOVES being baby - in his self-concept- he sees himself as a small child. And he likes it that way

The other day he told me that he was a toddler.

Most neurotypicals have the peer pressure/natural incentive to start become more independent.

I remember my niece was barely talking and all she wanted to do was do things by herself, when she stopped wanting to be in our laps.

But it’s time to gently nudge him along on this journey.

To nudge myself along as well.

For its not just that I enjoy my sweet child so very much, it’s also that he was so ill for so long.

It’s made me want to be an armor around him – so defenseless and fragile he seems to me.

But that crisis has become part of our normal and we are no longer in that day-to -day mindset of urgency

Its time for this baby, this baby-mama to grow up

This post was written for Hopeful Parents.