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.

that a child's birthday was a time to celebrate

I used to think that a child's birthday was a time to celebrate.
I didn't understand why the families I worked with hesitated.
Hesitated to throw a party.
Why my party suggestions were met with blank stares.
Not all the time.
Not for every child (especially the wee ones),
Not every year.
But sometimes they just didn't seem to want my suggestions:
   We could have people there to help make it successful.
   Plan activities the child and their peers enjoyed.
That should alleviate any concerns.
But it didn't.

Then this beautiful boy came into my life.
The first birthday he celebrated with me was a joyous event.
Then a year passed.
I cried for the whole week of his birthday.
I knew too much.
I knew what gains he wasn't making.
I could see the struggles ahead.
This wasn't a day to celebrate.
This was a day to morn.
To morn the loss of dreams.
Nothing can describe the pain.
To know that your child will never "get it".
Will never make a years'  worth of gains.
The 365 days that have passed are not filled with milestones.
They are marked by hard work, sacrifice and high costs.

The next years we went through the motions.
I hosted parties. Expensive ones, cheap ones.
Parties that other kids would like and want to come to.
Some years were better than others.
Some years it didn't hurt so much, or at least thats what I'd like to think.

Cake Pops in the park

Each spring I've marked the anniversary of when he came to live with me by writing an e-letter update.
This year I drew blank
I had no words to describe the hardest days I have ever walked through
 - there are battle scars to prove it.
I had no stories of success.
Nothing amazing that has been accomplished in a year.
The only words that came to mind were,
we made it.

This year I threw a different kind of party.
A party in the park. His favourite place.
We painted faces (not his).
We ran and played in the trees and the creek.
We ate cake pops. We sang Happy Birthday.
I told people what gifts to buy - iTunes gift cards!
And everyone celebrated his birthday.
But not me.
I had cried buckets of tears that week.
But at the party I was smiling.
Not a fake smile.
I was celebrating that
we made it!

And it was a good party :)

who I am

I used to think that my biggest weakness was something that I needed to apologize for and work on.

That a successful person didn't tear up when things got intense.

So I worked on it. and apologized. and worked on it. and apologized.

and after 10 years there was marginal improvement.

I tried replacement behaviors, satiation, manding for a break, calm down techniques like squeezing my hands and counting to 10.

Yet still I found myself apologizing

 to the social workers who call me “emotionally unstable”

And then Steve Jobs' biography by Walter Isaacson came out.

I read about how the man who brought us our beloved iPhone 

was known for waterworks in meetings.

This made me think...

A short time later a video of Kristen Bell’s recent appearance on Ellen came across my Facebook page.

Her hysterical reaction to an encounter with sloths made me laugh,

then it made me think...

If these two famous people could cry and yet be successful.

Then why was I apologizing?

Now I’m not saying I plan to go around bawling at everything.

I realize that the sight of watery eyes is disconcerting for many,

it might make you feel uncomfortable.

you might not not how to react.

But if Steve Jobs and Kristen Bell could be so passionate about computers or sloths, then shouldn't things like children with autism and their best interests about also be worth a few tears?

Just because I cry when things get intense doesn't mean that I’m illogical or unstable.

I am thinking,

I firmly believe in what I know.

I am stable,

I’m not going to budge because someone says it can’t be done.

Just look what people with passion can accomplish.

I used to think I had to apologize for who I am.

But now I am just going to start with a disclaimer:
You Tube: Kristen on Ellen

“First thing you should know about me, if I’m not between a 3 and a 7 on the emotional scale, I’m crying.” Kristen Bell.

That I was superwoman.

I used 2 think that I was superwoman, 

that I could do it all:

• Work as a behaviour interventionist for kids with autism

• Support, advocate and fundraise for families.

• Run a home-based business.

• Survive being married and divorced before 25, then settle down for "Take 2" before turning 30.

• Finish my degree.

• Travel the globe.

• Be a painter/artist/writer

• Have time to enjoy life, spending it with family and great friends.

Then in 2008 I added:

• Foster a young child with autism.

And for a while I thought I could be superwoman.

Maybe some people think that I am.

But by my standards I've failed. 

Please don't try to cheer me up by arguing this.

When I started fostering I thought I knew what I was getting in to. 

After all I'd:

• grown up with a sister who has special needs.

• worked since 2000 in families' homes, teaching skills to their children with autism.

• seen kids make great gains with intervention.

• done weekend respite for years, even with several children.

• seen challenging behaviours and tough situations.

So it wouldn't be that much different, right? Right!?!

I use to think that I was superwoman, that I could do it all..

And then along came a boy who has taught me about the world, about others, about myself.

If I had known that I couldn't be the iconic figure would I have chosen to foster?

Would any parent choose to have children if they knew the challenges ahead?

Most parents chose to be parents, but the part about their child having autism (or any special needs) gets thrown in.

For parents there is no choice, not really.

I knew this child had autism, and yet still I chose…

But my heart tells me that's not how it was.

It wasn't really a choice.

I saw a boy who needed help, and so I stepped forward.

I didn't choose.

He, this life, it chose me.

So now I've leaned that if I'm going to be anything close to superwoman, I better modify my list! I can't do it all perfectly, but I can do a few things well.

This realization and acceptance leaves me in a reflective place. I decided to share this because, well, selfishly it's therapeutic. And perhaps as I share my realizations, you may gleam something about the world of autism, parenting children with special needs, or being a behaviour interventionist. Or perhaps you know me, and are curious to read about your part in all of this!