August 2011


I have never considered myself a poet before.

But today, my first poem ever is on the SPD Blogger Network.

I was inspired by the book Autism disrupted: A Mother’s Journey to Hope by Jennie Linthorst.  I needed to write this.

Thank you to Jennie for your guidance and your belief that “everyone is a writer.”

Someday, if I write that book, this poem will be the first page.

Gravity

Click HERE for my poem Gravity

and while there, enter to win Jennie’s book of inspirational poems at Autism disrupted: A Mother’s Journey to Hope

We interrupt our regularly scheduled post about our vacation week for a hurricane related one.

Hurricane Irene barreled her way up the East Coast this weekend, and right into our home.  I knew something was brewing Saturday morning, as we were packing up from our vacation, cut short by one day.  Howie was relentless in his request for hugs.  Every three minutes he was crawling all over me.  And when he wasn’t asking for a hug, he was smashing himself into something.  Or someone.

By this morning, I had my own hurricane.  Spinning, whirling, crashing.  A wild path of destruction.

He’s my walking barometer.  I’ve learned now that when he’s completely dysregulated, a storm is brewing.  Inside and out.

When he’s like this, I just don’t know what to do.  I know the stimming and the behavior is hurricane related.  But how much do I try to redirect it when it’s caused by the force of nature?  My inclination was to let it go, but it was making his brothers crazy.

My youngest imitates the nonsense language and out of control behaviors.  My oldest is tormented by them.

There are times when I wish it was just me and Howie.  I could just let him be.  Like a hurricane that veers off to sea, there would be no one to destroy in his path.  He could spin and run and scream bathroom words and yell out phrases that sound like he’s swearing.  And no innocent bystanders would be caught in his path, begging for him to stop.

But we don’t live like that.  The five of us had to be in the house together and ride out the storm.

It was a very long day.

Around 4pm, the skies suddenly cleared and the wind stopped blowing.  Outside the hurricane had passed.

Inside, we had a lot of cleaning up to do.  The bumping and the crashing and the yelling had not stopped.

I grabbed Howie’s hand and told everyone I was taking him for a walk.  Still in our pajamas, we headed out to survey the damage.  A quick trip up and down the block showed that we were the only place in town that still had power.  A few puddle splashes later, we were back in our yard.

And I let my hurricane go.

runningmore runningbranch breakingmore runningsplashing

He broke tree branches.  He dove into puddles.  He did laps around the trees in our yard.  He ran back and forth and back and forth and back and forth.

Forty-five minutes later, he was done.  Downgraded to a minor tropical depression, we headed inside for dinner.

And all was calm again.

I don’t know how to give him the space he needs to make himself feel better.  All I know is that somehow I have to get him to let it out of his system before we all get dragged into it.

Hopefully it’s a long long time before we have to figure it out again

Goodnight, Irene.

You are like a hurricane
There’s calm in your eye.
And I’m gettin’ blown away
To somewhere safer
where the feeling stays.
I want to love you but
I’m getting blown away.
– Like A Hurricane by Neil Young

I’ve never done a “Wordless Wednesday” before.

But I couldn’t pass this up.

This picture left me speechless.

Last year, my son wouldn’t touch sand.  Kept shoes on.  No beach.

This year…

Behold…

Wait for it…

Who needs a weighted blanket?

He kept asking for more sand.  More decorations.

Look at his eyes.  Relaxed.

“It’s like a giant sandy hug.”

Thank you to my friends who got him into the sand and covered him up and scratched his nose.  If his knee wasn’t itchy, I think he’d still be there.

It’s my one year anniversary at Hopeful Parents.  In my very first post for that site, I wrote about acceptance of my son’s diagnosis.

This time, I’m writing about acceptance again.  But in a very different way.

Come join me at Road to Acceptance over at Hopeful Parents.  And click around.  Every day there are some amazing writers sharing their stories about special needs parenting.

Hopeful Parents

Road To Acceptance

 **********

And if you have a moment…I’ve been honored with a nomination at Parents Magazine for best Special Needs Blog.  Come vote for me and all the other great blogs there.  They are all worthy of your vote.

Why am I walking?

Two weeks ago, when I registered for the Walk for Autism Speaks, I wrote this on my donation page:

“It’s not only okay to be different, it’s FANTASTIC!”

Those words were on the wrapper of a Dove Chocolate Bar, given to me by my son’s teachers.  Ask him how his day is, and he’ll say “fantastic”.  Every single time.

When our son was diagnosed on the autism spectrum in 2009, we didn’t know where to go or who to turn to. We didn’t know what the phrase “PDD-NOS” meant. We didn’t know if our friends and family would still be by our side.

Fast forward two years later, and here we are. Our family stuck by us. Our friends are still with us. And along this journey, we’ve made some new incredible friends that have become our family.

We found hope and a new beginning for our family. And it all started here.

We’re walking for all the kids like our son. For the 1 in 110 children on the autism spectrum. For the 1 in 88 military families living with autism.

For the child that was just diagnosed yesterday, and the one that will be diagnosed tomorrow.

We’re walking for hope. And for a bright beginning to their new futures. We’re walking to show that being different is pretty fantastic.

Join us. Please.

When I wrote this, I didn’t know that the child diagnosed yesterday would be my own.

So now, I’m walking for another.

I see the spectrum in my own children.  I see the spectrum in my friends’ children.  I see the spectrum of mothers and fathers coping with this diagnosis any way they can.

We need money to help our families.  My friends need access to doctors, information about scientific research studies,  respite care, support groups and increased availability of services.

My friends need hope and community.  I need hope and community.

I’ll be joined on walk day by my family and by the people who have become my family. We’ll have a picnic at the park and walk by the ocean.

Together we will show the world who is affected by autism spectrum disorder.  It’s me.  And my boys.  And the people who love and care about us.

Wait until you see how powerful we can be when we walk as one.  Join us.  Please.

footloose

“You’re playing so cool
Obeying every rule
Dig way down in your heart
You’re yearning, burning for some
Somebody to tell you
That life ain’t passing you by
I’m trying to tell you
It will if you don’t even try
You can fly if you’d only cut
Loose, footloose
Kick off your Sunday shoes ” – Footloose by Kenny Loggins

Click HERE to find a walk in your area

“You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.” From Welcome to the Club, 2009. For my dear friend, A and anyone who else needs to hear it today. – Diary of A Mom’s Facebook status.  August 8, 2011

**********

Breathe

At 8:30am yesterday morning, I sat in a small evaluation room at the Center for Special Needs for Children at Tufts Floating Hospital.  The doctor had some papers for me to sign before our appointment began, and she handed me a pen and a blue folder to lean on.

I recognized the folder right away.  It was the same one I was handed on December 22, 2009.  The day Howie was diagnosed.

The Autism Packet.

“Based on the autism diagnostic tests we did last week and our interactions with him, we’re giving Lewis a diagnosis of PDD-NOS.  He’s on the mild end of the spectrum.  I can see how early intervention could have checked off all the boxes.  But when you dig deeper into his play skills, his social pragmatics delay…there’s a lot of deficiencies.  He’s a kid that will fall through the cracks.  You’re really going to have to advocate for him.”

**********

Still breathing…

In the hallway, with my packet and preliminary diagnosis letter in hand, I send out a bunch of texts to some friends.  “They gave him a PDD-NOS diagnosis.”

Words of love and support flooded back in short phrases of 140 characters or less.  “Nothing is different than it was yesterday.” and “Full hug today.  Take the time you need.  Call if you want.  You can do this.” and “You ok?  He will thrive at our preschool” and “Dammit.”

**********

Barely breathing…

I am angry.  Not at the diagnosis.  Not at the label.  At me.  And the whole process.  I’m reeling because I didn’t see the labeling. I tell my friends that “the doctor says he has inconsistent behavior and speech. Not the ‘right’ play skills. An inability to transfer knowledge from different circumstances (i.e. he can make me a Lego birthday cake at home but can’t play birthday party with a play-doh one). Scripted language and direction. “

I tell them that I’m kicking myself for canceling this appointment back in March, when we could have had spring and summer therapy time. And for kidding myself that it was just an articulation delay and nothing else.

I say that I’m beating myself up, thinking that if I had spent less time on facebook or blogging, I’d have spent more time on the floor playing with him, and not leaving it up to his brothers to play.  Learning their behaviors. But I HATE playing sometimes. I am tired of it.

I write that I know this doesn’t change my son.  But it changes me as a mother.  I’m questioning everything now.

“Stop.”  “You are doing and have done everything in your power to make things good for your children.” “You have loved him and seen HIM- not the things that fall under some check-off list.”

“One on the spectrum is one. Two is two. I get that this is a watershed moment. But you know what to do now. You’re already doing it; it’s just a little more weight in your pack. You’ve got this. And you’ve got us.”

**********

Breathing again…

It’s a new day today.  I’m listening to Lewis laugh and play with his speech therapist.  As I sip my coffee, I think back to the hallway at Tufts Floating Hospital.  The office for pediatric oncology is right next to the Center for Children with Special Needs.  I’m reminded that my kids are healthy.  This is not a death sentence diagnosis.  I have been here before.  This time, I know what I’m doing.  But now, I have my club to help me.

**********

Welcome To The Club was one of the first things I ever read after Howie’s diagnosis.  At the time, I didn’t understand how important this club would become.  The people I have met during this journey have been my lifeline.  They understand my jokes and my pain.  They don’t judge, they only listen.  I felt every single one of them in that room with me on diagnosis day. They are the reason that I am breathing freely today.

I am a card carrying member of this club two times over now.  I can’t think of a better group to travel with.

I move on holding on to what I learn, it’s time to let go of the notion
That the whole world’s against me
Break free of shackles that formed young, time free in now
And now I know, it’s not all up to me, I can count on another
So move on lighter and be free ….

’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
And so this moment, I just have to sing out loud
And say I love I like and breathe in now
And say I love I live and breathe in now ” – Breathe In Now by George

“Meltdowns Happen.”

They used to be a lot more frequent around here, but we’ve been in a lull.  Until last Thursday.

Read my new post about how I was “stuck in a moment” at the SPD Blogger Network.  And see how my son pulled me out.

Stuck In A Moment

(and while there, click around a little.  Inspiring posts.  Incredible writers.  All with one goal – making us all feel a little less alone.)

Follow

Get every new post delivered to your Inbox.

Join 2,661 other followers