December 2012


I wasn’t going to write about Sandy Hook.

I couldn’t.  For the most part I’ve had to walk away. I haven’t watched TV since Friday.  Have filtered my Facebook feed.  The harsh reality of the “it could happen anywhere and those children were my child’s age” was just too much to take in.

But then today I read this.  About Dylan Hockley and his aide Anne Marie Murphy:

(from the New Caanan, CT news):

Staring down the barrel of a rifle, Anne Marie Murphy pulled Dylan Hockley close to her, trying to shield him from the hail of bullets that would kill them both.

Dylan, 6, had special needs, his family said Monday. And Murphy was his “amazing” aide, they said. He loved her, pointing happily to her photo on the Hockley’s refrigerator every day…

“We cannot speak highly enough of Dawn Hochsprung and Mary Sherlach, exceptional women who knew both our children and who specifically helped us navigate Dylan’s special education needs,” Dylan’s parents said. “Dylan’s teacher, Vicki Soto, was warm and funny, and Dylan loved her dearly.”

And I was instantly undone.

Dylan is the same age as Howie.  And in that moment of extreme terror and confusion, he was sheltered and comforted by the person he trusted the most in that school.  His aide.

This is where it hit so close to home.

I know that from the moment Howie gets on the bus until the moment he gets home he has someone with him who cares about his as much as we do. They share in his successes like they are their own and struggle along with him when he is challenged.  His teachers – all of them – are by his side every moment of the day making sure he is safe and comfortable in his own skin and in his surroundings.

I could not send my child to school today or any day if I didn’t have complete trust in them.

I cannot imagine the grief that this family is feeling.  I write this with tears streaming down my face as I sit next to a sleeping Howie.  I watch him dream, so blissfully unaware of what has happened and how everything has changed for so many yet nothing has changed for him.  His teachers are keeping it that way.

Out there in the world people are angry.  There is fighting and name calling over politics and policies and privacy and we are lashing out at one another because there is no one thing to blame so we blame each other.

But it should be Dylan’s story to be the story that is shared. The one that reminds us that even in the face of such horror, our kids turn to and are protected by the people that love them. The one that highlights the bond between student and teacher.  The teacher that for so many of us special needs parents becomes the caregiver we trust the most.  In so many respects, they are their lifeline to the outside world.

I want my son’s teachers to know my gratitude for being there for him every moment of the day. To every single one of the teachers and staff who have been my son’s guiding light from the moment he entered school, I am forever grateful for what you’ve given us.

I find the words of Dylan’s parents to be particularly striking: “We are forever bound together and hope we can support and find solace with each other.”

I hope the rest of us can find that too.

thank you

thank you

“As I walk on through this wicked world,
Searching for light in the darkness of insanity,
I ask myself, Is all hope lost?
Is there only pain, and hatred, and misery?

And each time I feel like this inside,
There’s one thing I wanna know,
What’s so funny ’bout peace, love, and understanding?,
What’s so funny ’bout peace, love, and understanding?

And as I walked on through troubled times,
My spirit gets so downhearted sometimes,
So where are the strong?,
And who are the trusted?,
And where is the harmony?,
Sweet harmony

‘Cause each time I feel it slipping away, just makes me wanna cry,
What’s so funny ’bout peace, love, and understanding?,
What’s so funny ’bout peace, love, and understanding?

So where are the strong?,
And who are the trusted?,
And where is the harmony?,
Sweet harmony

‘Cause each time I feel it slipping away, just makes me wanna cry,
What’s so funny ’bout peace, love, and understanding?,
What’s so funny ’bout peace, love, and understanding?,
What’s so funny ’bout peace, love, and understanding?” – Elvis Costello

Advertisements

Dentist appointment today for Howie.

Just the thought sends shivers through me.  Past appointments have gone very well (at this dentist anyway…we won’t talk about our previous dentist who refused to let me in the room with him, even when he was screaming and crying…moving on…) but you just never know, right?

I usually take the kids separately but this time I had Lewis with me too as an observer.

There were a million ways for this to go bad.

After a failed attempt at x-rays (again), the hygienist asked Howie to lie down so she could clean his teeth.

This had never been a problem spot in the past but for some reason today Howie refused.

I went into full alert knowing that at any moment we could be completely done here, which would mean completely done with the dentist for a long time.

“Can you sit him up a bit?  Howie, you need to lie down just a little longer so she can make your teeth sparkle. Want me to hold your hand?”

Howie sat up and looked at Lewis.

“I want Lewis to sit with me and hold my hand.”

And so…

IMG_20121212_104043

He did.

IMG_20121212_104221

Hold my hand
Want you to hold my hand
Hold my hand
Ill take you to a place where you can be
Hold my hand
Anything you wanna be because
I wanna love you the best that, the best that I can.” – Hold My Hand by Hootie and The Blowfish

An letter to a friend who is having a second child evaluated for a diagnosis…

Dear Friend,

Come here and sit down.

You have a million things to do, I get that.  But please.  Have a seat.

I know you’re struggling.  I do.

I know making that call for an evaluation was hard.  Really really hard.  You can dismiss it but I know that it took everything you had to do it.

The first time you made that call for your older child it might not have been as tough.  Maybe your pediatrician suggested it or maybe the school did.  You didn’t know what questions you were going to be asked or how much paperwork you would need to fill out.  You didn’t know what the appointments were about or how many people would get involved.  All you knew then was that people were telling you something was different about your child.

This time, though, this time you know.  You know that it means hours of paperwork and interviews and testing for your little one.  You know what they will ask and how they will ask it, looking at every little milestone under a microscope and questioning every detail of your child’s development.

You think you can’t do this again.  You think you can’t hear the words again.  You think you can’t handle the hours and the logistics and the emotions.

But you can.

I know because I was there too.

It was about 18 months between diagnoses in our house.

It took me so long to pull the trigger on making the appointments for Lewis.  I would make the appointment and then cancel.  I would stare at the paperwork.  I spent so much time looking for “it” – the something that would be my sign that he was on the spectrum or not.  He was so different from Howie. Early intervention would come out three times before he was eligible for speech therapy.  And in the midst of it all we were working on Howie’s IEP and learning words like PECS and ABA and sensory diet.

The day after Lewis was diagnosed with PDD-NOS, I shared what I friend wrote to me:

“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.”

My friend, I say those words back to you.  One kid with a diagnosis is one.  Two is two.

You’ve got this.

I can say this now about 15 months after Lewis’ diagnosis.

The teacher meetings are the same.  Just times two.

The home therapy that was a part of our life with one is now a part of our life with two.

And our kids are thriving thanks to early intervention, great teachers and an incredible village of friends.

Lewis met almost every goal on his IEP this year.  And is meeting every goal in his home therapy.

My friend, I know you can do this.  I know what a great parent you are.

Things are different now.

That knowledge that made it so hard to make that phone call in the beginning is now your power.

You know that the journey isn’t so scary.

You know what to do.  You know what questions to ask.  You know who to call and where to turn and who has your back.

You know this road.

And you know you aren’t on it alone.

Never alone

Never alone

(I encourage you to read Welcome to the Club again if you haven’t already.  It hits home with one child. But it means even more with two.)
 
“Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m going to make this place your home
Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be foundJust know you’re not alone
Cause I’m going to make this place your home” – Home by Phillip Phillips