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
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
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?
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
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