Being Present : A week in my life

I think when I am old ,  I will look back on these years as "The Great Famine of Time "

A new job , a longer commute, a tiny kitchen, none of my efficiency gadgets ,  no weekend home therapists

So that I also don't look back on this era as the years my life happened while I was doing other things, I am developing new coping mechanisms

Some of these are relatively simple ones - like my hour in the car battling traffic , is repositioned as "me time" . I listen to an audio book ( Ruth Rendell 's "Road Rage is what I re-reading right now )  drink a latte ( that I make at home) on my way in and sparkling water on my way out

We are cooking about 3 times a week ( instead of on the weekend ) as temporary housing means we don't have all our gadgets

We have changed our plan to live in a particular area and are buying a house that will be 10 minutes from work and school ( so the commute problem will in 3 weeks be a thing of the past )

But the most important thing is being present

I think a lot of time my stress is simply accelerated by me thinking of what I need to do next

The biggest part of it is  being where you are

Fully

Making it a neurological habit

And the second is journaling it

Here is a week in my life

Saturday

On Saturday,I got someone to take R to the park and play with him -

It was such a peaceful 2 hours

There is this Hispanic woman who lives in our apartment complex - she is very sweet
She was making balloons for kids at one of those apartment socials

- when I whispered to her that she should not be offended if Rohan does not answer her questions as he is autistic and she said that she also does not speak ( English ) very well as she is Mexican
This really won my heart

Plus because of her language problem , she uses English and also gestures for each thing which is great

R comes back - we eat lunch and go shopping

We have to buy R his October Wii product and he wants a pink Wii Remote

We buy it but we don't let him open it as he needs to learn to wait and I get a real gift as R decides to manipulate
After several "Can I open the pink wii remote?" go inheeded - he says to me
"I love you mama... can I open the Wii remote ?"

Sunday

We go to the library where R is delighted to find Welcome Books and he talks incessantly of his beloved Miss gypsi


We also go the gorgeous park( though the ceaseless rain has started )  - where we make a new Friend "Miss Harriet".

How blue are these waters?

A golden Lab  is lost in the park and we are trying to call the owner to come and get her

I think Miss Harriet is lonely ( aren't we all ?) and we have a lovely chat . We are newcomers and she has lived in PNW for 70 years . She was a United Airline attendant

Everybody has a story

She has three grown up kids ( 2 of them "surprises")

Monday

Though the incessant rain has started , I think its still quite beautiful

Despite the rain R and I still go to the park - I get quite misty when I read these park benches and think of my Irish bloggy friends

Tuesday
R is so excited that DH  has got his face paint ( though he really wants face markers )
Can you see his hands move ?

And then the quick run to the bathroom to work on his face

Wednesday
I feel I learn so much about R's world by just observing what interests him . Like his search history

Like the way he has discovered that the world looks different with glasses and without

Along with all the stress of the moving has come some tears and many fixations ( this times its elevators ) . A lot of asking for things he knows he will get a "no " to ( just to have a good cry )
But I am still very proud of him for his great adaptability

Thursday

We have his IEP meeting early this morning and have to leave early though R is reluctant to wake up

- R sits in this IEP as his class has not started yet

On the plus side , I am rather impressed with his teacher as she has very accurately defined all his strengths and opportunities.

On the minus side, OMG there are so many opportunities

These last few months , I have been so distracted by the move , that I have forgotten a lot of the autie mum stuff:-(

R is very very distracted in the evening when I get home from work

We do the stairs and elevator ( his current obsession )

At bedtime though, I tell him that his teacher "Mrs S" really likes him .

OMG he cries and cries

How did I forget that we talked about his strengths and weaknesses in front of him !

I cry too

I snuggle him a lot and I apologize to him and I tell him that he is the best child in the world and I am lucky to be his mum

I believe this 100%

Friday

DH is going to India tmrw for his high school reunion

So much of a team are we that I do not know a million things to do . So we run around getting our groceries done , changing the wipers of my car etc


R fawns on all the vegetables ( owing to Veggie tales ) I certainly wish this would extend to eating them but it stops there

It is symbiotic parasitism though - DH too will still text me asking me what he should eat for lunch  ( even though all our meals are prepared and kept in the frig )

Saturday

R is super clingy with DH

But then when the time comes for DH to go to the taxi - he asks and asks for his babysitter to come and get him and is bursting into tears every few minutes

I realize that he really does not want to see DH go (- he is so much my son -  I am the queen of denial as well ) and luckily Judith is free so she comes by and takes him to the Mall play area ( from where he comes back later with a balloon )

Mis Judith tells me she just loves him - and does not mind that he wanted to be carried a lot

Even though he Is 7 , he is still such a baby sometimes

But like everything about him , I enjoy this too as I feel like we get to enjoy a babyhood in slow motion

And this was a week in my life dear friends

By writing about this week and being present in my life, its a week that is now saved and can be enjoyed later :-)

Happy Sunday to you too

 

Settling in

My dear friends

So we changed everything at the beginning of this month and we are getting to the end of it

How has it all been

On the whole pretty good

There is all the stuff and hassle that starting over brings.

But it was expected

The new will become routine.

I am very busy at work settling into a new culture and a new way of doing things and a really really fast pace
For instance its not uncommon to check your phone and find a 100 new emails in your inbox:-) and 19 new meeting notices !!

They do some lovely things as well - this year the employees are trying to raise 100 million dollars for charity ( and the company matches it !!!)

For instance the second week I am here - we are given the day off to spend a day at the home for elderly and disabled

I am a fortune teller and use flash cards to tell rather imaginative fortunes

Its a lovely day

To be with people who have so much pain in their life and who still soldier on - many of them so cheerfully really fills your heart

On my birthday, I am in my office till 8.30 - buts its still a wonderful one , since DH comes to the office with some flowers and candy.

And we still go to dinner for Pizza and Gelato

DH is very very busy as well with getting mortgage etc all done for buying a new house

The new house( which we will move into in October end )  is quite lovely and has all the things we need

1. Place for sensory Therapy Room
2. Close to a park
3. Close to my office ( just 3 miles )
4. Close to R's school

We are trying to minimize all the irritations that commuting brings to life

R is doing quite well - he likes his new ST and OT and his new ABA therapist( though of course we miss our older therapist team like an ache )

I miss my office as well and I have made a little shrine to it in my office here

While we miss our small southern town so much, there are so many lovely things here
For instance , super kind people

Since we are in downtown , we often have a chance to go to festivals - and R is obsessed with Face paintings and balloons

OMG people go out of their way to be nice and accommodating when I say to them that he has Autism

R is doing quite well

He is till more tantrummy and weepy sometimes so we know that his inner world is a little unsettled

But despite it , he is also blossoming

I notice him noticing other kids

Here another kid is trying to get my attention . Since R is a jealous cat , its no surprise that he tries to get me away from the child

But what IS surprising that he tries to get my attention by doing what the other kid did

The weather is glorious almost every single day and we spend so much time outside in the Downtown park
Playing

Seeing the sky - There is a lovely light in the Pacific North West

Watching the moon come up

Watching the ducks

I think the beauty of this place is so therapeautic, that each day I feel all the stress of all the changes fading away

For what is more constant than the forests and the lakes

And the  mountains ( can you see Rainier in the background)

"A cloud moved close.. a tree swayed over water and a voice said .. stay"
Thomas Roethke

The beginnings of many things in the Pacific North West

My dear Friends

How apologetic I am that I have not visited your blogs for a couple of weeks!

Busy is an understatement for how its been !

Promise to visit  your blogs very soon

So all I talked about the last few posts was that we were moving

Are you wondering how it went ?

Well the last bit of August was all about Goodbyes

Goodbyes to R's therapists -

 Our last team meeting ( just the words want to make me cry )

So much have these women meant to us these past few years

S

Goodbye to my work friends

My work friends were so lovely - my BFF had this idea of circulating this diary around where everyone wrote something special about my relationship with them ( and this diary along with a few notes from my other work friends are sitting on my desk in my new office like a talisman of warmer times )

On my last day my team took me out to lunch and they had planned a big surprise and the chairman of the company showed up to wish me luck

They are such fantastic people

The cabin we have put on a rental program - the last weekend DH and I drove down to say goodbye

I took a last few goodbye pictures

Our bedroom where I used to wake up and see the sky when I woke up

The lovely smoky mountains of Tennessee will always have my heart -

As we drove back to our home from the cabin down these lovely green hills - I thought about how I did not even know the names Knoxville, Sevierville and Gatlinburg 10 years ago.

R's therapists came to say Goodbye to him at the airport and it just made me cry

And then it was time to go

We landed in Seattle when the Pacific Northwest was at its most spectacular

We were so exhausted mentally and physically when we reached the apartment that my new company has given us for 2 months

The apartment is right in downtown and its joy to have a little respite from the burden of things that has become our life

( I have become convinced that we need a lot less stuff than we think we do )

DH and I have decided that the most important thing will be to sell R on Seattle

Fortunately, the apartment has all the things that are so important to R

A giant playground and park right downstairs where there are plastic toys galore

Here R climbs a slide , but sometime he really does not care about what the other kids are doing are thinking

 In many ways a nice thing as I wonder if they are sometimes thinking unkind things :-(

And he sits atop enjoying the view from the top

 

Every piece of plastic that has been made , is here

 

 

It has a duck pond

And a Fountain ( which R loves throwing pennies in )

Not just this - there is Pizza place in the same block and there is a Mall really close by and R gets to visit with his favorite relative - Aunt Annie

 

 

That weekend there is even a cultural festival in the park and they have outdoor Bounce equipment

And face painting

This last one has been a HUGE passion for him ( owing to him having seen some TV characters do it - he has been trying to paint his own face with markers and has been strictly told not to do so - Naturally,  this means he is even more wild to do it !!)

Of course he has asked for a red star and a green star ( such is his loyalty to Coke and Sprite )

The weather ( which will turn awful next month ) has been very unusual - warm and sunny each day
( almost a little hot for us  - as the apartment does not have air conditioning )

the apartment even has a heated pool

Plus his school will only start next week and as R is a real aficionado of the slothful life he is very happy to swim , play and stim on his Tablet all day

And frank, I am grateful for this little oasis for him as the last months have been incredibly stressful

He starts School on Monday with a school that has a program for "High functioning autistic kids "

(  DH  does like the school so far - I have not been to any meetings- thank god for my husband who does all these things so well )

And how am I in all this?

There are many stresses that come for a person like me

Do you know I have a terrible sense of direction

DH helps me out a lot by taking me for practice drives and making detailed maps for me.

The day I have to go to office for the first time I am a little in tears when I see that he has parked the car in reverse as a little surprise . These are the "I love you"'s of not-new marriages and they move me just as much as the other surprises he used to do for me 17 years ago when we first met

Starting a new job in a new industry is both exhilarating, exhausting  and terrifying .

Which I can say perhaps of the whole move ..

I get my strength from my knowledge and from my relationships with people and here I have to start to build it all from scratch

How and why do we always leave ?

And yet I think its the right thing for us

For somewhere in my heart I know that home is not a place for me

Its where these two are

 

10 tips on having a good home therapy program

The fabulous chairman of the company I used to work for, used to say that there are only two secrets to having a successful company 

First , Hire good people

 Second, Treat them well 

This is great advice for running a home therapy program - DH and I have had a home therapy programs for 5 years now and here are some things we learned.( of course, this is just our experience) 

We had a special situation in that there were not many new therapies available in our area . Despite this we had great therapists and R did well !

HIRE  GOOD PEOPLE

1. Heart 

In our experience good therapists  have a combination of heart and head - We had the good instincts to never ignore  the former.

2. We looked  for warmth and kindness. 

Its always puzzled me that while autisim is a disorder of social relatedness, many parents will not treat the power of the therapists social interaction with the child Many of our kiddos start their programs when they are mere babies . R particularly did much better with therapists that loved him and showered him with affection ( who wouldn't?)

3. "Different not less" attitude

We hired people who did not treat R as disabled and who saw his strengths as well as his opportunities . 

A child's spirit and self esteem are precious things and must be nurtured above all else 

4. Positive attitude  : 

the other day I was talking to a mum of a 4 year old who said that her speechie wondered aloud that her child would probably never talk .

Our speechie and therapists never said that even though R barely had any words till 5 . 

Its good to be realistic but we found it was better to err more on the side of being cautiously optimistic ( guess what? R talks a lot now ) 

TREAT THE GOOD PEOPLE  WELL

5 Pay well if you can 

We always paid a little above the average market rate. ( our area was a little affordable, so this was possible for us to do  ) 

Since we were paying for a lot of therapy for a lot of years we had to find ways to afford it without putting our retirement in jeopardy 

One such way was,  when we were doing ABA was to have a senior BCBA who would create the programs and then have more younger implementors 

But also dont think that the rate really  reflects the quality - R has had magical  therapists who charge $ 18   an hour and we have had ( briefly ) pretty useless people at $150 an hour

6. Have team meetings 

The biggest benefit of team meetings is that therapists got together and were able to brainstorm together on something that they were each facing with R .

Plus - team thinkings the hallmark of a custom therapy program - one of the biggest mistakes we can do is I think to have a bunch of therapists doing a bunch of things 

Its also a venue for you to share all that you are learning from other parents, training programs etc 

Its much better when there is a concerted effort around one goal - (that changes as the needs of the child change - in our case our goal started out pretty basic - learn the point of communication and then became progressively more and more complex to  reading comprehension and play )

While having team meetings can seem expensive - I think its something that really pays off
7. Always follow through with what the therapists suggest -

 if the therapist recommends using PECS then we knew R would learn PECS much faster if we used them all day - rather than just the 3 - 4 hours in the day that he was with his therapists 

8. Have realistic expectations : 

Teaching children is not easy - teaching autistic children is definitely not easy
9.Encourage creativity : 

Our therapist team frequently had ideas that are not traditional ( like doing communication therapy in the local bounce house or the swimming pool ). These sessions eventually became our normal !

 10. Treat your  therapist like you would like our therapist to treat your  child !!

Our  therapist team were all of them very altrustic people and they were in it to help kids like R. 

Most therapists feel nourished by words of praise and thoughtful gestures and so we lavished this on ours

Have you told your child's therapist lately that you love her? We did ! A lot !


Floortime Lite Mama and Floortime Lite Papa would like to thank the amazing therapists that helped raise their amazing child 

Thank you Miss Gypsi, Miss Tori , Miss Kristen, Miss Sadie, Miss Erin, Miss Melissa, Miss Scott, Miss Holly, Miss Joelle , Miss Chrsten, Miss Michelle

We  are richer for knowing you

This article is written for hopeful parents and has been published there today  at www.hopefulparents.org

The end of summer

The end of many things

Summer is over

And out time in Knoxville is over too

Its a time of endings

And much as though I know of the importance of focusing on the new beginnings that are to come in September

I am in  mourning and in anxiety

What is adding to a lot of anxiety is that while we leave in a few days, we still don't know exactly where we will live ( my new employer provides corporate housing for a few weeks but they only tell you the address 72 hours before you move- - which means we will only know  next week where R will start school next Thursday and he will start school on Tuesday  )

Leaving a workplace I have loved is a wrench as well

And leaving our beloved therapists

DH is stressed too as he is taking care of all the logistics

Usually I depend on him to say "screw it" or "whatever will be, will be "

But these days he is tired too with all the work

Look how cute our kitchen looks with its new granite surfaces

We are explorers

Even with all this stress, both DH and I know we are making the right decision for our family and have no regrets

We know the first few months will be difficult but we are the sort of people that have moved to new places all our life and this is what we want

Some people believe in laying down roots, others want to explore.

Finding Perfect Moments

Some weeks life is perfect

Some other weeks life is not

But even in these bad stressful anxiety filled weeks there are so many perfect moments

And that is what I try to put the light on

R has had 3-4 sessions pretty much every day in the summer - but that still leaves a lot of time to be free and do what he wants

And he is really blossoming

3-4 year old skills coming

OMG the pretend play finally

How much time he spends wearing the Ming Ming costume from wonderpets -

How he makes us smile as he admires himself in the mirror with each article of the costume

While I am aware these skills are coming 4 years later than they should, if anything it gives me even more joy

( I was just talking to another mother on the phone the other day and we were talking about how much parenting an ASD kid is like extreme parenting - the worries can be low - but the joys - Oh my !!)

He is sooo loving to me
Miss S shared with me a set of word connections he had made the other day

How wonderful to see your child associate the word "love" with Mama?

I tear up just thinking about it

I often tell DH that we won the kid lottery

And we really did!


His cousin send him a Rakhi from India and I wanted to send a picture of his hand wearing it

R posed and said "hands say cheese"

The other day DH was exasperated when R dropped his Coromega and said "R you are being a Jaanwar" ( this means animal in Hindi  - a language thatR we think does not know )

But R did

He replied "woof woof, meaow meaow , fox fox"

DH and I burst out laughing

I love the way he explores and is interested in everything

Its a 3-4 year old stage a, but I don't think of it that way - its just a miracle to see his development unfold and we celebrate his interests with such joy !!

( I hope you are not bored reading about these miracles )

Connecting with my sister

My sister and I have discovered Wassup and we delight in sending each other silly expressions all day
Here is she - preening because her students got a prize( that is not blood on her forehead - its sindoor - vermilion that traditional married women put on their foreheads as a sign of being married- hers just got smudged  )

Here I am sending a look of stunned admiration

R and his Therapists

R is getting to spend a lot of time with his therapists

What touches me is how often someone will just volunteer to take him on their own

here is his beloved Mrs K - taking him to a football match

She has made a photo album for him titled "Th adventures of Mrs K and R " and it made me cry !! so sweet is she :-)


Therapy in new places

One thing we did not do earlier and we do a lot of now is do therapy in new places

We know biologically the optimal situation for neuronal growth is novelty + emotion

So why would we think it was good to always be in the therapy room

Here is Miss S and R - out for ice cream( though probably just a little went into his stomach )

We have been doing a lot of his sessions at the local Bounce House

The park, the library and the swimming pool are our other therapy rooms

Not that R is not anxious - I asked him how he felt about moving and he said he was "scared and happy "

He also bursts into tears a lot of sometimes spoils for a fight with me ( do your kiddos do that ?)

I am trying hard to stay calm and happy myself - as his moods feed off mine

All in all , the trick for happiness is to shine the light on the lovely bits and spend little time dealing on the difficult bits

How do you get through anxious times?