Tuesday, September 2, 2014

R, A and K at the start of September


My dear readers

Can you believe its September already? Since fall starts early in Seattle – we can already see the glorious reddening of the trees and that delicious nip in the air.

Unlike Seattle natives - I am not a huge fan of summer and am rather glad it's over.

I am looking forward to the cooler air.

Even the return of the soft rain and the queer emerald light of trees that are so green that you could sink into their depths and never reach the end of the color.


Here is what we did and thought in the last few months 

ILS

We started the Integrated Learning System

 
Its classical music that you listen "through the bones in your head"

 
I have started this with great skepticism as it sounds like so many of these airy fairy autism things.

 
But DH who is both parsimonious and not easily swept away has decided that we will shell out 2500 dollars for it. 

This is a serious vote of confidence!

So I start with a spirit of resigned cooperation ( all married couples know this dance, I am sure)

 
R does not like this much either.

 
He keeps telling me that it's not the right music –"its Beethoven' sixth symphony 4th movement" – which is a terrible thing apparently while he wants "Beethoven's 9th symphony 3rd movement" or something like that.

Anyway I start with threats – that I will not take him to Sears (whose Hydraulic elevators are a particular object of passion right now) if he does not

And over the days it becomes a habit and he willingly enough submit to this therapy for 15 minutes daily.


Turns out DH was right about the efficacy of ILS. There are many unexpected firsts that have come

 
Imitation of emotion: Example: We were reading a story (the peddler and the monkeys who stole his cap) I dressed a toy monkey and made R shake his fist and say "You monkey you". And he was really able to do it. 
My autistic boy pretending to be a character from a story and acting out an emotion.!

Expressing original opinions Example: One day when I told him that he had a new therapist to replace Kate and said the name was Peter. He said shocked "Peter is a man??" I want a woman"

Focus, Attention and with-itness: No example for this - but I think you know what I mean

 

Seattle Autism Center

We have been here 2 years and only now do and only after being forever on the wait list - we have the great fortune of getting an appointment at the Seattle Autism Center.

Most of these appointments usually work out to be useless and we never learn anything new – the only satisfaction is that at the very least – we are leaving no stone unturned.

I act with an outward cynicism (this is one of superstitious beliefs that if I don't hope for anything – something good will turn up. Sometimes I exaggerate my lack of hope for this reason. A second reason is the realists' coping strategy – if you don't expect you are not disappointed)

But in my heart, I am 100% hoping that there might be something that we don't know, but they will.

In the car, I tell DH that if they ask us for "his history" and "our approach", tell us we are "great parents" and hand us brochures with "information"- I am going to blow my top.

I want them to spot something tangible- something that we were missing in his overall developmental plan. 

Maybe tell us why language is so slow for him despite us doing all the right things-Speech therapy 3-5 times a week for the past 6 years, enriched environment, Floortime, tech apps etc)

Two young women usher us in – after we waited and filled out a 1000 forms.


The artwork around - made by autistic children looks promising 


Then they introduce themselves and say that they are brand new. One is a nurse practitioner and the other is a trainee

I feel the hot anger rising within me and find myself saying

"We have been in this journey for 7 years- we really aren't looking for any feel-good validation or brochures about therapies – we are really looking for an autism specialist – someone who has seen a lot of autistic kids and can tell us a bit about the road ahead .. And you both are obviously just out of school"


They both look nonplussed and then recover with effort 


As I look at them, I also realized that it isn't their fault.


They are nice professionals who did not have any answers beyond the basics on Autism.

We go on tediously over his whole history –when did autism start, when did we notice something "was wrong ?" blah blah blah

( all of which DH has meticulously filled out in the forms – but we still had to say it out as well while the nice lady takes copious notes)

Then- - they tell us that we are "amazing" and "doing all the right things" and they handed some brochures on "information in the area"

DH tells me later that he did not think I was very nice.

But I am frustrated - Surely someone should know more about autism and what to do than us?

In the car we discussed why I was upset and why DH is not .


The thing is that even after all these years I feel that there is something that could be a step change for R- instead of this incremental progress. After all the time looking for a magic answer -there isn't one


Autism just is.

Acknowledging that A& K have certainly changed


The only useful part of this appointment was that while explaining R to these folks, I discover the following things about us – we have certainly changed over time as autism parents 

1. First, we are perfectly fine with R's autism (it's a different kind of acceptance than the "autism-is-a-gift" style of thinking that others and I have had in the past. I don't think around the gift-curse pivot any more) 


2. We are fine in every way – but language –that is the only thing that actually makes life harder for him


3. We don't sweat too much over his lack of peer interaction. This is a problem only for others. He is certainly not friendless just because he has no friends of his age. In fact R is more beloved than many children I know with a strong network of family, adults and therapists.


4. R has a sense of humor but its only for himself- for instance he uses his Augmentative Speech app to type in jokes for himself.


5. In the chaos that he surround himself with there is great symbolism and harmony. You just need to understand him – like when he take Pablo, Leo and Linny to the park – it means that he is going to go a place where there will be an elevator that goes to P( for Pablo and for "Parking" ) and L and L for Lower Lobby.

This(set of letters) for instance is a portrait of Bellevue Downtown. 
Letter R is for him and the other letters stand for Macy's, JC Penney, Hyatt Regency( he cannot pronounce Regency as he has only read and not heard it and his mis-pronunciation is so cute) Nordstrom etc ..


We just understand R so much better than the professional.

6. We don't question why certain things bring him joy – they just do. R cannot explain the pleasure of a Macy's gift card with no money in it anymore than I can explain the pleasure of ice cream . The only difference is that since the pleasure of ice cream is so typical – no one asks for an explanation. Whereas R's joys are seen as peculiar and warranting deciphering.

 

The new therapist

Is VERY VERY nice. Despite being a man R has taken to him So nice in fact that I am waiting for the other shoe to drop

Grans

The grans are visiting and really really bonding with R- they have always had love - but a connection is so much more.


I think my MIL does not like this house as much as the one in Knoxville .

But she is falling under the spell of this majestic state

Here are the "minus points"( as Indians say) of our Seattle house

First she loves us to be all together and the guest room is on a different floor than where DH watches TV

Second -there really isn't a garden – there is a forest -since the little forest behind our house has a stream that goes directly into the lake – we are not supposed to interfere with the natural things

Third, the house does not have any home improvement projects as it is a fully done house
All these things are anathema to my MIL as she is a very hardworking woman who loves leaving things better than she found them.

Ma says that she sees a LOT of improvement in R – R has really started getting connected with her as well – 

This was all thanks to a breakthrough moment. Y'all may know that R is obsessed with perfume?

One day R had been smelling DH's Polo Fragrance and had lost the cap. While DH was telling off R – MIL found the cap for him Oh how the tragedy turned to triumph

MIL and I have a common bond that is unique mums of kiddos with special needs have ( my SIL has a seizure disorder)

The other day MIL told us that if she had only given my SIL Phenobarbital when she was 4 months old – she would not have developed a epileptogenic area.
That my SIL probably had encephalitis.

I feel so sad for Ma as I totally understand these feelings of guilt -this particular brand of guilt – the feeling that we could have prevented something bad for our precious ones is something all special needs moms know all about 

 
Sightseeing 

When we first moved here – a Seattle transplant who lived in TN though her heart was clearly back in WA ,made this ridiculous statement .

I asked her – what do people do all the time because it rains so much?
She answered "there is so much to do that you will be laughing and crying at the same time. Laughing 
because you are enjoying all the activities and crying because you don't have the energy or time to do more. 
There is THAT much to do in Seattle"

Guess what? She was totally right.

WA may be the most beautiful place on earth. Here are just a few photos from some of the glorious places we have been
Leavenworth : Fake German Town but SOOOO gorgeous


Space Needle by night- Even more beautiful.


Kahler Glen and Wenatchee: Dear goodness - the endless skies and the bluest lakes.

Deception Pass: The ocean that swirls in mysterious layers
 

Seattle Waterfront 

Portland Japanese Garden:


Mt Helen: The Volcano that blew its top ( the legend goes she was jealous of her man Mt Rainier who had another woman – another mountain whose name I forget- Surely must have been a legend created by a man.) 

 

2020 lifestyles

Guys – in the past two years of being in Microsoft – I have gained an enormous amount of weight and lost a ton of fitness

I have kept putting things off for when I have more time.

But I have come to realize that this messy, busy, beautiful life is not going to calm down

That I need to make a real change and invest in my health and energy without waiting for the right time

Since I am turning 40, I have decided that this will be my birthday present

So this is it - guys I am doing that crazy program where you eat crazy things and work out crazily.

Wish me luck and hope that you see less of me in my photos in the Fall and Winter

 

9 comments:

Deb said...

Thanks for the update! I love the peace and acceptance that flows through your writing. (I am turning 40 this year, too.) :)

Kim said...

I enjoyed reading this update and can relate to how you felt going to the autism center and then realizing so much about yourselves in the process. This journey is altering, in a good way. I love all that you said about the acceptance you have gained. Beautiful photos too!

Sophie's Trains said...

I laughed at the visit to the autism centre- sounds so much like me and my husband- no more brochures!! Aaargh :) and the calm realization that no one understands Sophie better than us (and a bit of panic at the sheer responsibility of that too). Love your updates.

Bright Side of Life said...

K, you are a very very wise woman. I loved reading this post and I wish you luck with the crazy diet and exercise program! Where there is a will, there is a way! xx

Looking for Blue Sky said...

I have a very good friend from Seattle, who also has a hold with autism, and it looks and sounds like the coolest place in the US to me.

I'm sorry that you didn't get any help from the Autism Center though. Even when you realise that you are the experts on your own child, it would be comforting to hope that there are others who 'get' him too xx

Anonymous said...

Thank you so much for taking the time to write. I love reading your blogs, it's like receiving a letter from a dear friend. I've learned a lot from your writings . Continue doing what your doing.

Anonymous said...

Loved this, k!
manju

Dawn Marcotte said...

Thanks for sharing - I love the books Caps for Sale - I used to read it all the time to both my girls when they were younger.

I share your frustration on having to verbally give the information you have already completed on the forms - if they aren't going to read them, why do we fill them out in the first place?

It sounds like you had a nice summer overall - thanks for sharing.

robin said...

I love 'lil R stories. I can visualize him smelling cologne bottles or holding his letters through your writings. I hope that the Fall is even better up there and that you're doing well with your journey on getting more healthy. Loved the pictures!

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