Monday, January 17, 2011, Donna Sauraq Erickson of Unalakleet, Alaska, posts the following on her Facebook wall:
I remember the day of my son’s diagnosis.
Autism.
The Doctor’s eyes,
His voice,
Empathy & compassion.
“Lifelong disability”
The nurse’s station in Nome.
No cure.
How his words “I’m sorry” still sting.
Silence.
Unbelievable.
I held my struggling son close, hoping they were wrong.
What was autism?
I had never heard it before.
I had forgotten.
Home.
Endless hours on the internet.
Reading anything I could.
I went to the school district library & checked out 4 big books.
I cried.
I read.
Sleep deprived.
Logan screaming, running, throwing himself against the wall.
Over and over.
And over.
Non stop.
No sleep
One night.
Two nights.
Three.
I called work & said I needed to quit.
My boss flew to Unalakleet.
Told me to take some time off.
4 months.
They sent someone to put an aircraft radio, huge antenna, hand held radio, & phone line.
“You can work at home now”
Blessed.
Autism is messy.
Daily.
Weekly.
Non stop diaper changes
and stripping beds.
Cleaning smeared poop on floors & walls.
Became a habit.
Logan twirling
round and round
and round.
Non stop.
Head banging
Prayer.
Leaning on my strong husband.
Learning to live on no sleep.
“We’ll sleep when we die”
became a private joke.
Tried many things.
The latest cures.
Signed up for the medicaid waiver.
6 year waiting list.
I didn’t have six years.
So I called.
Daily.
Governor Knowles.
Than Murkowski.
3 months straight.
Maybe 4.
At 10 and 3
Everyday.
“Sorry”
Didn’t stop.
My son needs therapy
Now
Not in six years.
Murkowski finally said “Okay
I’ve had enough..”
He decided to come to
Unalakleet
to go fishing
and talk
about autism.
Tom Daschle.
Powder,
envelope.
Terrorism.
Government plane turned around.
“Sorry”
“I can’t make it.”
“We’ll talk another time”
I have no time.
I cried.
Tired.
Need help.
We were too tired to fish.
No dried fish.
No berries.
No subsistence.
It hurt.
Felt Lost.
Days.
Weeks.
Filling out manifests,
did I get the numbers right?
I’m sorry
I would tell pilots.
“It’s okay”
They’d say.
I could see some were sorry
and some didn’t know what to say.
I learned to not let anyone know.
Became a habit.
Prayer.
and more.
Ted Stevens.
Denali Commission.
Looking at the new seawall in town.
“Can you help me?”
No.
That’s state level.
I’m on a federal level.
He saw my tears.
“Talk to me” he said.
I told him everything.
He made a phone call.
The next day Logan had the waiver.
up to 80 thousand dollars a year
for therapy
supplies
treatments.
Trampolines,
trainings
doctors
vitamin b shots
Logan & I went to a conference
We met
Temple Grandin
She helped me
She looked for us in the hotel
“I know what he feels like”
She said.
Press him.
Squeeze him.
He needs it.
Home.
It calmed him down.
but still
Tantrums
crying
sleepless nights
unending.
Poop smeared on walls
bathrooms flooded
washable paint isn’t washable.
Food crushed
on the floor
on the bed
on the couch
in every room
everyday
still today.
non stop
Moaning
Crying
hitting himself on the head.
Prayer.
Exhaustion
Autism is expensive
doctors
medications
sensory equiptment
You cannot go out.
No ball games
No potlucks
No church.
10 years old
still changing diapers
We cheer and clap when a word is finally said
one word.
“Bugging”
Logan said when annoyed.
What joy!
What triumph!
So precious
and innocent
relief when he finally falls asleep
rest from anxiety
his anxiety
his fears
lights on
always lights on
fear of the dark
Unhealthy diet
chips
chips and water
keeping him alive
how does he grow?
Then we met Juke
life saver
comforter
reliable
faithful
Sleep.
for once, sleep.
Logan starts
dressing himself
Accomplishment.
triumph!
he says a word
here
and there
What joy!
Laughter overcomes the tears
Triumph overcomes the devastation
Small accomplishments
Make huge celebrations.
Logan
still pushes
Juke away
But he sleeps better
with him.
and I sleep.
We sleep.
Triumph.
My boys help.
Daily.
Dad takes night shifts
We take turns.
Juke changes this.
So many people to thank
Big hearts
Caring hearts
helping hands.
Logan & Juke are asleep.
My time is up.
Precious sleep
Here I come
tomorrow
continues
Our Journey With Autism.
