that there was a fight to win

When i started this journey
each challenge i faced
looked like a fight.
And i thought that 

when the fight was won
that it was over.

Then in a few months
or maybe a year later - 
Perhaps with different players
or a different arena
but in essence really the same fight
the fight i had already won.

i started to feel like

this isn't a fight to win
this is a fight to survive.

My warrior sword was growing heavy
my dearest comrades

no longer at my side.

i earnestly thought 

about laying it all down.
Save myself.

Everyone would understand 

i looked at the road ahead

there was no fight left in me

Then the moment i decided to

give up

let go

My heart grew heavy

i knew i couldn't live with

myself without that puzzle piece.

Slowly i began to see
how many friends

New and old
are standing with me
i realized this isn't a battle to win

this is my lifelong crusade.

that autism isolates

This is the handout we gave to flight attendants and fellow travellers.

Autism

isolates us

but if you let it

Autism

connects us

Proudly show

our blue puzzle piece

Conversations start

a cousin

a brother

a son

autism

Those who know

understand 

how hard 

this journey is

Autism 

up in the air

here I find

understanding 

compassion

Autism

connects us

if you let it

That I knew the magic formula

I used to think

That I knew the magic formula 

for successful marriages/relationships

Love, time together, communicate..

Divorce rates are high

Families whose children have special needs,

their rates are even higher rates!

I've already been a static once.

So as I walked 

through the journey of fostering

with the man I'd known half my life

I thought we could make it.

Love

- got that one covered

Make time for each other

- well, when there was time left..

Communicate 

- yup. I talked, he listened..

And when things weren't working

- head to counselling

But nothing I did or tried could change

his not wanting to be a dad to a kid with autism.

Perhaps it was an excuse to not commit

but the reason he gave still stings.

So 4 yrs after becoming a parent 

I sit here single and look around 

at couples (with kids with ASD) who are together

 and they didn't follow the magic formula!

So what's your secret?

Please share so I can find the right formula!

Or maybe there isn't one...

How each family makes it work IS the magic.

that i only wrote sad poetry

Almost two decades of 

bright paintings

when I was happy,

sad poetry 

when I was melancholy.

Now, it seems, 

things have changed.

Clinging to 

the new me.

so I share.

That doing more meant having more

Hard work

work more hours

take on more

work harder

work longer

take on more

That was me.

It meant 

accomplishing more

having more

getting further.

Lately I've worked less

but I have more.

More happiness

more joy

more laughter

more love

I have a boy who

smiles more

we tickle more

we hug more

we enjoy life more.

Now I'm not suggesting

living in a tent on the beach,

(although the thought has crossed my mind)

there are still bills to be paid,

but sometimes doing less

means having more.

That I could survive summer

Summer is for adventure
Swimming by day
Warm nights by the campfire
Traveling places
Making memories

At least that's the way it was growing up.

Enter the world of autism.
Summer is for therapy
Therapy in the morning
Therapy in the mid day
Therapy in the afternoon

Enter school years.

I thought that summer from kindergarten to grade one would be, just about the same.
And when there wasn't therapy,
since now we have less funding for over age 6,
we would enjoy summer.

The kinds of summers I had growing up.
I thought I could survive summer.
How hard could it be?

I was wrong.

By September we were barely standing.
And what started in the summer carried on and on
And by winter we were in survival mode.
But by spring things were coming around.
Though I knew summer was coming...

I thought I could survive this time.
I had a new plan and I had money for staff!
Then plans fell apart and so did my life.
Spring turned to summer and school days turned to chaos.
The boy noticed all this and behaviours began.

I reset my goal: Survive Summer
And I made a new plan.
July and August went by
Now September is here.
We didn't survive summer
We enjoyed it!!

hours at beaches
bike rides to the park
swimming in pools
water parks with friends
jumping/falling off the dock at the lake
roasting mash mellows by the campfire
making memories!

So do you want to know,
how did I survive summer?
Well let me tell you,
I really don't know!

But if you want I can ask all the caregivers, tutors, respite providers, my best friends, business partner, dear friends, toy friends, new friends, old friends, friends who have kids on the spectrum, social workers, nutritionist, behaviour consultants and my parents... they might be able to tell you..but perhaps they are the answer why -

WE survived summer.

Thank you everyone :)

That I was too optimistic

Yes, I've always been an optimist.

The glass isn't half full (or empty) it's totally full! With air and water!

But then I started to think that I was too optimistic.

<start disclaimer>
Now let's be clear that posting these thoughts have taken many months of deliberation. When I shared a rough draft of the idea with a close friend we decided the thoughts were too dark and deep for so early in my blog writing. So I put this idea in my draft box - which essentially created a writer's block. On several occasions I ignored the urge to post. It is now clear that in order to move on I need to share this.
<end disclaimer>


After years of working with children with autism I knew the stats:
about half will be "best outcome"
knowing the stats and living them are two different things.

I knew after the first year the road that we were to travel.
not the road to "best outcome"
and in my dark place I began to look at the families I know

pouring all their energy, time, resources and money
and "trying everything"
didn't they know where they were headed?

then I began to think - shouldn't someone let them know,
be "real" with them
about the challenges they were facing?

Shouldn't we help prepare parents?
So I became a "realist"
and left my optimism behind

What I didn't understand,
in my new role as "foster parent"
is that these parents already knew!

They didn't need me to point out
what was going 'wrong'
they lived it every day.

For the next years I kept going,
from realist to pessimist
Living this way,
not realizing that something was missing.

Until one day a new tutor came in
with a smile on his face

No matter how rough of a session
they'd had the last time

the next day the tutor came in
with a smile on his face

I heard what was happening
I knew all the tell tale noises

but the next day the tutor came in

wearing a shirt just for therapy, and a smile on his face.

I didn't know what to think.
At first I thought the tutor was just crazy
then I began to remember and recognize
that I was once that kind of crazy.

Parents would comment
that I always came in smiling...
What happened to person?
She got lost along the way

but what was lost
wasn't just optimism
or the quest for "best outcome"
what was lost was hope.

With every smile that greeted me
the pessimism started to chip away.
I started to see a reason to hope,
to find my optimism.

Seeing joy in the moment
in the little accomplishments

How for this house "best outcome" means
the best for this boy.

Each angel that comes to the door
with a smile on their face

thank you for helping me to find my optimism.
Again I can see the glass as full, full of hope.