Thursday, June 5, 2014

The Start of Summer in Seattle

Dear readers

May is the first month in the days since the blog started that I have not written at all

Not just me but all my autism friends – whether it be Julie, Four sea stars, Sturlungi, Once upon, Lynn Hudoba  and so many more

It’s as though we have made a collective decision to do other things

We worry about having said too much

Sometimes we have said it all and we have nothing more to say.

And sometimes life gets in the way

But blogging for me is as much a connection with you, as it’s a connection to me.

More, it’s a connection to the self that I want to be.

It’s a moment to stop and think about my life and where I am going.

Where is my energy, where is my focus?

So I don’t intend to stop writing anytime son

Thank you for reading and I promise to keep writing.

Going out

We took a day trip to Deception Pass and the Tulip festival in Skagit Valley. You guys it’s so beautiful. 

While these past almost 2 years now – have been some of the most stressful years of my life – a huge compensating factor has been the sheer beauty of this part of America

I will say no more and just let the pictures do the talking

Reclaiming weekends

Work is again encroaching into my personal life.  This is like the weeds that take over your life as soon as you stop weeding them out.

I have to do all the disciplined things again – turn my email off on the weekend – 45-50 hour intense work week is enough.

Some days I am so bedraggled after having been in meetings for 9 hours straight – I am just completely depleted and all I can do is just be.

Still I do the little things. I pause myself from getting out of bed instantly in the mornings – on Saturdays and Sundays-

 I bring in Nespressos for DH and me and we all sit together in this little love nest pushing away the hurry of the day 

Isn't the difficult world so much easier to face when you ease into it so gently?

I read happy books like the Harry Potter series, Merry Hall (Beverly Nichols)- (this book is in the 1940's and he is in the closet - a fact that is so obvious when he writes about how repelled he is by women's advances. But its apparently not obvious to these women) and find myself reverting to more gentler ways of being

We lounge in our hammocks
DH and I take long walks in the trails behind our house

Whenever we can - I find time for myself and nature 

Getting organized

DH and I are finally getting into spring cleaning – 

I have taken away about a 1000 books from R’s playroom that are the combination of not being loved nor being appropriate

R’s progress

In April we get notes from his teachers  saying he is not very social and that he will frequently go off topic completely – I am very upset.

DH – ever practical - works out some strategies with the teacher and he is doing so much better.

I am often reinforced in my belief as to how unsuitable school is for a kid like R.

 That he is either stuck “counting leaves” with all special needs lumped into one. OR he has to work with the very social special needs kids.

 Where is the child with classic autism and academic potential to go?

If we could start over, there are three things I would do differently – start speech therapy earlier, not send him to daycare and have a home based program for most of the day. We always had a home-based program but it was all after school and he was spending so much time and energy in school that there was not much left over for the rest.

I go for a meeting with his school teachers.

Fortuitously, his teachers have had days with him just prior to the school meeting where the other kids in the groups have not turned up. They have gotten to see a very different R – regulated, interactive and joyful
As such their impression of him is very different than it was before and they now think that he needs to be paired up with peer-mentors – not other kids with special needs – something we have been wanting to do anyway

I have been stressed about this meeting and have taken cookie brownies ( have you ever made these guys? So awesome) 

His center where he spends most of his time he is doing very well- lots of challenges in Reading comprehension but doing very well in Math and Science

Other kids 

DH and I always said that R was never interested in other kids. But there is a certain change in this  that we are noticing 

Play dates with other kids with Autism 

In R's social skills class there is another child whose parents we really like and so we decide to do a play date - This child is very sweet and they have the funniest interactions - kind of like a relay race. 

S will leave a bucket in the sand. Then he will move away.

R will then play with the bucket

And so on 

These funny little interactions are clearly enjoyable to both as the next two weeks they ask to play with each other again

He is suddenly into other kids as well - DH's engineering friends come for a trip to India and R is so enamored by "the girl". He follows her everywhere, her picture is now his screensaver and he tries to get me to mix some Sprite in her glass of water so she can have the little cocktail that is R's favorite thing 

 Ditto  our neighbors- on both sides of our house - we have found really accepting pleasant people who are completely unfazed by R walking into their garages to take a closer look at their cases of Coca Cola.R always takes pics of their kids as well.

Floortime and Autism 

What about Floortime? Well I would tell you how he was doing if there really was a lick’s worth of Floortime I was doing.

I am just too tired from work and now in the 7th year of autism and the second year of Crohn’s some of my energy has fizzled out.

I just want to be mom.

And sometimes I just want to be.

Most days though we have a fairly interactive routine- so very much a floortime lifestyle.

Usually when I come home and the rain has held off - R is waiting with his picnic bag.

We take cupcake for R and small Sprite can and a bottle of Talking Rain (club soda) for me.

On evenings like this I get little gems from R.

We were drinking our sodas

He said “Sprite has 90 calories” and then he asked me “how many calories does Talking rain have”

I am  so proud

We make boats with a soap that he was carrying in the picnic basket. 

With a leaf and twig as mast. We pretend things are other things and act our little scenes - a bottle cap will become a hot air balloon ( my idea ). But then the doll will fly away (r's idea) 

 Even though his pretend play is primitive - it is very much present!

A high school student who is doing a project on R comes by to interview us. She is very impressed with us( or atleast very polite :-) ). 

As we talk to her, I think how much more we know than before.

Example - I used to think the question was about method -  what should we do Floortime or ABA or Sonrise. But I think just as important  as the  "what" question is the "who" question.

If I had an autism haiku  it would be 

Find the right people
Let them spend the right amount of time 
Make sure your child is happy

We are all sick today. 

And yet  I write this in my silent house when all the chores are done , the dishwasher and washing machine are set on their timers and my two sweets are tucked in bed with their cough drops and Vicks, all I feel is the blessedness of life when I stop rushing.

The pleasure of sitting down with a cup of peppermint tea and talking to you dear reader.

As though time was endless and I had all of eternity to watch each thought  come to life on the screen.

 I think of what his teacher told me " he is a happy little guy.. but the world is just going by too fast for him"

And I think, as much as we can, as long as we can we will slow things down.

You better slow down, don’t dance so fast,
Time is short, the music won’t last


Looking for Blue Sky said...

So glad to get an update -- more and more I'm finding that my favourite bloggers have stopped posting. I am also worrying about saying too much, but I can't seem to stop writing completely.

Similar issues here too about the lack of schools that provide an academic education to a child with social issues. There's none in Ireland.

Hope that work pressures calm and that you all feel better soon. xx said...

It was a great article... I am glad he is enjoying people. So many 1sts this year

1.class dates....
2.girls as screen savers....
3.bread as pizza base.

The boy is going places ..... enjoy him while you can the teens are round the corner.

Kris said...

So glad to read an update. I no longer blog. Just not much to say. Alex is really doing well although he has his "moments". He has become more social as well. He has started Ritalin which has worked wonders for him. Although I worry about him more than I do about my other kids, there is no longer that knot of fear in my gut when I think of his future.
R sounds like he is doing great! My husband was in the Pacific Northwest last week for the first time (I have never been) and he loved it and commented on the endless green. Enjoy!

Dr Asit Kumar Bhattacharyya said...

your blog is wonderful,elaborate &descriptive,u wander very well in ur thoughts,pl don't worry, each & every person born is born with his/ her "karma" & have to endure all its dictates, good or bad .so why worry,Rohan has his own schedule & he will follow it,we r just onlookers.Rohan is a wonderful boy,& I tell u ,He is a genius.

lisa said...

I am so glad to hear from you, my friend. I find myself worrying when I dont see your posts, but I convince myself that "in your own time, you will write". And then I smile when you post.
You're in my thoughts so much, and I thank the "heavens" that I am so blessed to know you!
Please continue to post, when you can, and know that your dear readers are just happy that you are so happy and rejoice with you! Sharing is caring, as our friend Bonnie would say!

Jill said...

Lovely as always K! How exciting that Rohan has a friend that he enjoys being with :) What a new adventure! I miss you - I love to read about your life.

Yuji said...

I see so much of my son in R and so I can relate to much of what you write about. Funny how something as simple as a play date, which most parents can take for granted, can be such a huge step for our kids.

"...the world is just going by too fast for him"... you know, sometimes I think that the world is going too fast for all of us. Hope you can find ways to slow things down, for R, but also for yourselves.

JoyMama said...

The note about absent autism blog-friends resonates -- I've been one. For me, lots has happened, including Facebook, an entire new in-real-life (ie non-blog) advocacy network, a new politics/policy awakening, a new career related to all of the above.

But I did just write a short Elvis Sightings post, for the first time in over a year. One month without a post, that's nuthin'! LOL!

Thank you for sticking with the blog. I love to read about you & R & DH!

Anonymous said...

I am glad you are back. I love your writing... it feels like a soft "Talking Rain" to me.

Bright Side of Life said...

Hey, K. So nice to read your post. What stands out for me this time is the fact that you talk about taking life slow. This really resonates with me as life is so much calmer for me and my boy because there is no rush. We take life so slow that it would be easy to nod off!! :-)
Looking forward to your next post. xx

kathleen said...

As always-lovely..even the hard bits. Sometimes I think that it is important to step away from blogging..and to take time to slow down-that is hard for me as is almost like work in a way! We too are dealing with some social things-finding ways to make them work in the way and time our girl needs them to-as opposed to how others need her to be. I hope things keep going up for you and yours..:)

robin said...

I've missed you. Glad to hear about R and your life. You see the positive in everything and I always feel better after reading. Hope you guys enjoy the beginning of summer!

Anonymous said...

It was so very nice to catch up with you. I can hear how tired you are, but I love how you are honest and real about it. R has grown so much and it's always a pleasure to hear how you all are doing. I think of you often and sometimes I miss writing about our days too. Daniel is in a part time summer academic program at his school, but was VERY disappointed. He thought the last day (in June) was the last day FOREVER! :( I hope that next year he can do the regular summer program and be with many of the same staff and peers, but in a more summer camp (fun) environment. Anyway, this year has been a struggle, but not so much with Daniel... our family is still all together, but it's been the rockiest and most horrible road. Things seem to have settled for now.

jazzygal said...

Another wonderful catch-up post! Some lots of positives. Great that you have suddenly realised you're happy in your 'new' job. I do hope things calm down workwise and that you get the right school placing for your boy :-) xx

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