Wednesday, August 22, 2012

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?
 

Sunday, August 5, 2012

Reclaiming a childhood

We are moving

I am going through all of R’s old toys – sorting out the things we want to keep and the things we want to donate

I and my friends have talked about how painful this can be

For you are not really sorting through things, as much as you are sorting through the different versions of you when you bought those things

All those earlier incarnations of you with the different hopes and fears of each stage

The blocks that gave way to the flash cards

Then the pretend play sets

The endless flashcards

And all those things from super duper inc

I tried to do a sorting out a couple of years ago – but had to stop

Today, thankfully, it does not hurt

Time has healed so much

Autism has become our normal and R our perfect whole complete child .

I think of one of the worst things about the early years of parenting an autistic child is that you get robbed of the joy of having a little one

This precious time wasted away with worry and anxiety !!!

( this is the most important reason I keep wanting to help new parents be more hopeful and positive and staying in the present )

We develop eyes that see everything through the lens of pathology

Everything a trait of autism, all gifts as splinter skills

But one of the gifts of acceptance is how I can even look back at that time and think about all the light and sweetness that was and is R


I smile at the tattered "my first numbers book"( one of many first numbers book ) - how he would stare at the page that said "7" with the 7 brightly colored balls

Once it was a memory of autism –now it’s just a memory of something my little guy loved

So what if that Thomas Train Sets ,main attraction remained the number that was on them etc and were never quite played with in the typical ways

So what if stuffed toys meant nothing, while foam numbers meant everything

That is just what he liked and who he is

Our thoughts are powerful

With our thoughts not only do we create our present ,but we also create our past

For like the present, the past is also an interpretation

And now, when I look at old pictures –I don’t see a child with special needs and a mother with special pain

I just see a small fat cute child ..a mother that loves

In this way, a lovely babyhood is reclaimed

This post is written for Hopeful Parents at www.hopefulparents.org

Saturday, August 4, 2012

The end of July

Since we are going to move in a month ( OMG I cannot believe it – 6 weeks ago we had NO idea we were going to end up moving across the country)  this last two weeks have been the emotional and physical logistics of getting ready for the move

Luckily- we are a pretty good team and divide up all the work -  DH is doing a large chunk of all the house and move related stuff – while I am trying to connect with parents there to find the best therapists , schools etc
There are so many things to do

  1. Putting the cabin up for rental ( getting it rental ready)
  2. Putting the house for sale ( and getting it sale ready)
  3. Finding a house in Seattle  in the school district we want ( and something we can afford for the house prices in Seattle are making our eyes bug out )
  4. Finding schools
  5. Finding new therapists
  6. Getting R , our beloved  therapists and us ready for a separation L- this one is truly hard as our therapists have become our friends and most of them have seen him from when he was a baby and did not know his own name

In the midst of it all life is also going on

A BOUNCE party

A friend of mine who adopted a child a year ago had her birthday party at a Bounce house

Its weird but though mom and daughter are of different racially – DH and I both noticed that the daughter  has started to look like mom

In fact two of my friends have and they are both here with their now complete families


Watching the happy family makes me all gooey eyed about adoption – its just such a wonderful thing

OMG R is having a blast – while as always he tries to avoid the kids – he is actually really excited about both the party and then the cake and pizza afterwards

The kid that is looking away ? yes that is my kid

( One thing gives me a pang – when R asks me several times to come sit with him and I realize that we are his only friends L )


A trip to Seattle

So we spend 4 days in Seattle in what my new employer calls a househunting trip

We are kind of excited about the trip as it feels like a short holiday and also we will be getting to the meet the lovely Rachel
R is super excited - the beloved mrs G has given him a "suitcase" which will be carried everywhere


But some of our joy is quelled by the vagaries of United - OMG how many delays can we have
R is a good traveler but I am really worried he will melt down

 He is happy to be drinking real sprite ( no water mixed, ) his Ipad and his black Doritos..


I am feeling very sorry for myself but the sight of a gorgeous woman striding along the concourse in Denver holding an icecream - with a prosthetic leg - helps me reframe my whiny thoughts
And  the view of Mt Rainier as we land is spectacular


We work with a really nice realtor and see a lot of Houses
One  houses has  really gorgeous view but the house is completely crappy and out of our price range – Dh falls in Love with it a little
Can you blame him ?


Another house has a dream eat in nook and I fall in love with it but DH is alarmed by the small closet in the master bedroom guessing ( correctly ) that he will not get any space in that at all
Since our rule is to never go with another’s veto – both these “dream houses “ are out
And we have put in an offer for a practical place – this is a short sale though- so it means a really long waiting ( the worst kind of wait – “Hurry up and wait “)-
We are perfectly willing to rent even if it is renting for a year so we are good

 Wish us luck – we know emotionally we are in a good place to bid for a short sale – not desperately in love, willing to rent for a while - please send us good vibes!!

Still it’s going to be a long and tiresome process, which we need to be mentally prepared for

R likes the area in general ( mostly becasue it has an Embassy Suites :-) ) and many vending machines and lots of pizza

Such is his simple heart
The new therapists

Academic focused ABA therapists
The first set of therapists we go to are a group of ABA therapists that come recommended by  a parent I got in touch with through the yahoo group ( thank you S and R )

We go there on Monday and they are running a social skills camp

It’s a little crowded – plus R is very very upset because 2 children are crying loudly ( this will eventually ruin our day as R is in an epic meltdown – crying and mewling to go back to his comfort zone – the horribly dated  embassy suites ) Our realtor ( also mother  of a special needs child ) scores very highly with us for being kind and making no comments on his terrible behavior




As punishment that night , I skip his whole bed time routine and he has to go to bed by himself – no story , no cuddles nothing !! Take that kid !

 What I like though is that the the head of the therapist is smart and makes R talk about why he is upset and make a drawing of the crying boy

He also suggests that we have some sessions in the office to work on social skills ( this raises my mommy hackles of course as I think R will have bad associations with that office but my cerebral side ( DH ) notices that there may be some benefit in it
We show him what we are doing with Teach me Language and he He shows us some of the things he is doing with another child ( who is says is “just like R “ ) where he is breaking down reading comprehension into tiny bits to enhance reading comprehension
Play based speech therapist-
R is VERY stressed out the next day as – he is anticipating a repeat of the previous day ( crying kids ) – so he is full of vocal stims and scripting . I am rather intrigued by how much he stims with scripts these days ( obviously we do not try to stop him as this is his coping mechanism as he is feeling anxious- and its much more important for him to feel relaxed then “impress” the new therapist )

I love the new speechie – she talks a lot about play techniques ( you can imagine how that goes straight to my heart ) And is completely accepting of R
Plus she is willing to do home visits another huge plus for us as it cuts down his time in the car

Now for the best part of the trip

Meeting Rachel , Mr Daddy and Itty Bit

Do you know the family that lives over at Once Upon a Miracle

Well you should definitely visit Rach's blog cause she writes fabulous posts

OMG this is so incredibly EPIC 

WONDERFUL

FANTASTIC

I have asked Rach to please makes sure that Itty does not feel bad if R does not engage with him
We have also spend time in the park to make sure R is feeling unstressed about meeting new people  ( as you know sensory stuff and playing outside is my prevention and cure for everything ) and it’s a GORGEOUS day

We meet in the downtown of a little neighboring town
They make a long drive to come and see us ( Thank you Rach  and Mr Daddy)
It is so wonderful - there is no awkward silence- Rach and I are like long lost buddies
Mr daddy and DH look like they have known each other for ever
Everything you think about these three from their blog, is true
They exude goodness, sweetness and light
We eat pizza, take walks and its like we have known them all our lives
Itty bit is fabulous - OMG he loves hamming for the camera

 – R and he are busy with their separate screens –
from time to time itty bit tries to engage and seems completely cool with R’s silences 

There is one thing fantastic about the special needs world -

Through it you will get in touch with some of the best people you ever knew

I

Floortime Lite Mama

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