Saturday, October 29, 2011

The last week of October

Saturday & Sunday 

Are Glorious gorgeous days.

I take a great walk around the whole perimeter of the mountain on which our cabin is.

I can barely move afterwards


I see lovely things like a gaggle of wild turkey that scurries off as soon as I get there


R is perishing to buy Wii Fit plus and we go to Walmart to get it -

 R and I are dressed really really badly.

Me in giant pullover that is clean but has a white paint marks right across the chest and R with his pj bottoms still on ( that I pretend look like pants !!!). These are perfectly appropriate clothes for Wal-Mart

BUT

DH unfortunately decides that we must stop at the Fancy mall .

R and I skulk outside Brooks brothers - the cynosure of all eyes

When we finally get to Walmart - they are actually out of the Wii-Fit plus .

I am so delighted that R responds so normally to the Walmart not having the Wii Fit plus.

R is finally able to listen to reason

On Sunday he goes to the Fall Festival with Miss K his therapist .. he dresses up as a doctor and looks adorable
Arent his therapists adorable ?

He has a lot of fun


Here I am delighted to see him actually pose for a picture

This is one" skill" that R had completely lost after his regression

How do neurotypical children know that they should look at the camera ?

Autie kids dont but R is slowly starting to get this back


His report card is all excellent - except for PT -( they give a lot of time to him BTW- so he does not have to turn the test in on time - I am also hoping that he does not get too much help from his aide. His aide is a very nice lady - BTW  )

Monday

I go home early  as DH is out to the cabin to get the gas tanks filled for our fireplace and grill.

 R vegges out after school

I drag him outside to get back into the routine of sensory activities and Floortime in the evenings

Its very very difficult to get his attention and I wonder if my energy is bad. R is extremely sensitive to my energy

Have you read "My stroke of Insight" by Jill Bolte Taylor- it may be my favorite book

While its a book about a nueroanatomist who has a stroke and how she recovers -

 I learned a lot about autism from this book

I have always felt that the biology of the kind of regression that R had ( regression with an acquired Apraxia ) is very akin to a stroke

For instance this quote really sums up what I mean by energy


"… I needed my visitors to bring me their positive energy. … I was very difficult for me to cope with people who came in with high anxious energy. I really needed people to take responsibility for the kid of energy they brought me. … Extremely nervous, anxious or angry people were counter-productive to my healing.” Jill Bolte Taylor

I so enjoy the extra two hours at home

Tuesday

Another beautiful sunny day

I am determined to be outside.

I read some really interesting research the other day that talked about how the brain further changes in children with AS in adolescent years .( ie becomes the difference between autie brains and NT brains can have more missed connections as the years go by )

Here I quote from the research.
"Researchers confirmed that the white-matter connections between the brain regions that are important for language and social skills were growing much slower in the boys with autism.
They also discovered a second anomaly: In two areas of the brain — the putamen, which is involved in learning, and the anterior cingulate, which helps regulate both cognitive and emotional processing — unused cells were not properly pruned away.


“Together, this creates unusual brain circuits, with cells that are overly connected to their close neighbors and under-connected to important cells further away, making it difficult for the brain to process information in a normal way,” Hua said."
( interestingly in the article the author- not the researcher - writes that "that understanding may put some parents' minds at ease. The maps clearly show the difference is chemical or biological, and no one's at fault.") 

Of course it does not put my mind at ease at all.

 A huge wave of guilt washes over me - 

This is the same downside of neuroplasticity that our Floortime Consultant talked about  and has just reminded me of the importance of constant intervention.

All of our brains are constantly forming and reforming

Autie kids are  doing a whole bunch of repetitive things in order to cope with their environment due to SPD and anxiety - no wonder some of their circuitry is not being properly formed

We go to McDonalds, R's school is having a fundraiser and so we go to show our support and we have a great time with Ronald actually comes to talk with R without knowing he has autism

Its WONDERFUL to see R engage with him so naturally and nicely

Wednesday

Is Diwali( Indian Christmas)  and DH's birthday

We go to the temple for - I have forgotten how beautifully and traditionally Indians dress up for Diwali

In leather boots and a suede jacket - I feel self conscious till I remember R's third birthday .

Coincidentally Diwali fell on R's birthday that year - ( the date of Diwali changes every year unlike Christmas )

That  day - 4 years ago - was really busy as my mother was having palpitations and so we went to the Doctors . On top of that , I wasted a lot of time getting a cake from a bakery  and dressing up in a sari

As a result, I really was not able to spend any time with R and celebrate him or burst firecrackers .

I still remember how hurt DH had been by my spending the day just running around .


Today almost 4 years later , I am really glad that my priorities are right and I think less about my clothes and more about experiencing the day with my special ones

Though DH tries to get R to hold the sparklers, R mostly sits on the glider closing his ears firmly




We go to Famous Dave's - DH's favorite barbecue place for dinner

 ( Famous Dave  is usally our Father's day tradition -However , the other barbecue place we go to has very bad associations for me as when DH and  were celebrating his birthday there last year - our closest friend called us and told us he was getting divorced )  and have amazing pecan pie and ice cream there

Thursday 


Is an incredibly wet and rainy day

And we just watch TV and do laundry .. when its time for bathtime and bed time - R is horrified that I have not played with him at all and the day is ending

So we play imaginary instruments for a while in the bathtub

I am always touched to see how he retains everything we teach him

Though it also makes me feel guilty as I remember how much more I should do

Friday 

The work day ends and we pack up as soon as we can to head to the cabin

As we enter the forest , DH grumbles about the people who he claims have a conspiracy to come in front of him in order to slow down and foil his ability to drive at a "decent pace"

But slowly the golds and reds and rusts of the forest work their magic and I just simply look around wanting to fly around in this beauty

In "the architecture of happiness", a book I am reading right now , the author says that when we come home we look at the things around us and remember who we are

But,  in the forest and in the cabin - I remember not so much who I am, but who I want to be and how I want to feel


If you have read on this far, thank you for reading this long long post .

I love re-reading these posts- where I write a little bit at the end of each day - a true journal .

For I know, I will love reading them  at another point as they will  let me relive these precious days

On your posts too - while I love the thought provoking ones - I especially adore the ones in which  you share the ordinary bits of your day

I hope you all have a lovely weekend my friends

Adios till next week 

16 comments:

Di said...

I also enjoy reading about every day life! Love your cabin, you must find it very relaxing, a complete wind down after your busy working days.

Dani G said...

love your posts! xoxo

lisa said...

I read your blog religiously, as you have become my inspiration! ON this beautiful day in Arkansas, as we have downsized to a small cabin near the lake, I am reminded that it was reading about your mountain cabin that made me begin to look for a smaller place. Our "big house" is being leased...and I am so grateful to just enjoy being! Hope we catch up soon.
Love, Lisa

Þorgerður said...

I love to see his pose... looking good :)

Trish said...

Such a handsome doctor, and I love that he posed so nicely! We almost always get the cheesy grin, and I treasure the shots that show my son's natural smile.

Mr. Daddy said...

K, for some reason your post reminded me of my favorite Robert Frost poem.

A Road not taken.


TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth; 5

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same, 10

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back. 15

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference. 20

loved your post K :o)

Rachel said...

I always love your posts. And I especially love that I had a sneak peek at one of my favorite parts (the Ronald video!)

Oh, and pitching a fit about the Wii Fit Plus? I totally did that all last Christmas :)

And friend... remember that even your guilt... R would not want you to have that. As much as we parents like to load ourselves up with it - we must simply acknowledge it as a WISH. And use that wish to do more of what we would like to, and less of what is not lasting.

(Speaking from a very guilt-ridden Mother's heart :)

Rachel said...

Oh - and that posed picture? I clicked on it to see it blown up. Because I was TICKLED to pieces over it. I grinned and grinned like a silly kid at the screen.

Gosh I wish I could hug your boy!

AutismWonderland said...

What a lovely post! Loved the photos :)

And I spit out my coffee and what is acceptable for Walmart but not acceptable for the "fancy" mall!

K- floortime lite mama said...

Thanks so much Di. Lisa and Lisa of Autism wonderland, Dani and Porgerour
What a lovely thing to say Lisa - I was delighted to find your blog - written with your usual irony and humor and loved it
Trish - I totally know what you mean by the cheesy posed grin -we get so many of those
Mr Daddy that is one of my very favorite poems !! thank yo so much for taking the time to leave that lovely comment
Rach my love - I know you know how mummies and guilt are never far apart
Rach

Yuji said...

Ah, I love how your posts on the ordinary moments in your life are just as thought provoking as your thought-provoking posts. :)

My wife is currently reading "My Stroke of Insight" and she says I have to read it, too.

Nice reflection about how your priorities have changed in the past four years. I'm sure R has had a lot to do with it.

Have a great week!

TherExtras said...

Wish I could give a running comment on each part of your post - just wishing! But my natural selection for the part to comment on is of course the research brain part. Thank you for sharing really meaningful and essential excerpts!

I pray that you will not use the information to make yourself feel guilty. Truly, you give R a wonderful lifestyle that promotes his development!

Barbara

Kim said...

I love reading your long posts too and can always imagine you and your family living your lives! Love the pictures!

Allison said...

These beautiful pictures make me remember I need to start appreciating the fall instead of hating the sudden chill. You also remind me I need to start reading more. And not just books about autism - short story collections that I love and that can provide a quick & harmless escape. Love these glimpses into your life!

danette said...

I love the everyday glimpses too :).

And LOVE that picture of R, what a precious smile!!

Julie said...

i love these journal like posts! it truly is the little things that matter! :)

Floortime Lite Mama

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