The Sun Will Come Out…Tomorrow

I have had so much to write about and no time to do it.

But I had to share this.

I took all three boys to see a local production of the play “Annie”.

“when I’m stuck with a day that’s gray and lonely…”

And we were able to go thanks to the incredible accommodations made by the Open Door Theater and the Autism Alliance of Metrowest.  They made it an autism-friendly show.

Which made it a family friendly show for us.

Read my review HERE at the Massmoms.com section of the Worcester Telegram.  And see why this experience meant so much to me.

 

All Star

Self-advocacy.

I’ve been thinking a lot lately about self-advocacy and how it could fit for Howie. I read Jess’ brilliant piece at Diary of a Mom about her daughter Brooke and her participation in her IEP meeting and I sat there trying to think of ways that Howie could start to participate. Ways for him to feel included in how his school plans are made. Wondering how, at age six, it could work for Howie.

He’s always been very good at expressing to others his joy or dislike for certain activities, whether it be through his words or through his behavior. In fact, when he transitioned from preschool to kindergarten, his teachers and aides all said “Just give Howie a minute to tell you his side. You may not agree with him, but if he feels like you heard him, he’ll be more likely to figure out the solution together.”

This year, the toughest part of the day for Howie is his “Fundations” class. It’s the spelling/language arts lesson. It’s mid-morning, and he moves into a different classroom for the lesson. Howie is in a 1st/2nd grade combined class. For the Fundations lesson, the first graders move next door to work with other first grade kids, and the second grade kids stay in his classroom and are joined by other second graders. I know it sounds complicated, but it works. But for Howie there are several things at play: a different teacher, a different classroom, different kids and a subject that is clearly “non-preferred”. It’s not that he can’t do the work, he just doesn’t like it. From the beginning of school this year, it’s the one real bumpy part of the day. He knows when it’s coming at 9:30 and his behavior and anxiety starts to amp up. Many mornings, he’s had to leave the classroom and do his Fundations lessons in the smaller sub-separate classroom away from his peers.

Which would be fine if that’s what he needed. But what he really wants – and needs – is to be a part of the larger group as much as possible to get the full lesson and work with his peers.

I’ve done a lot of brainstorming with his teachers about it – incentives, plans, etc. None of our ideas seem to stick.

Turns out, the ideas had to come from him.

When Howie returned to school after winter break, he sat down with one of his aides to talk about Fundations. He was perseverating on the fact that it was boring and that he thought he had to say “A – Apple – A” each time (practicing letter sounds). I got a note home that they had created a social story to help him get through the lesson.

“How to Stay in Fundations” by Howie

His teachers sent a copy of it home so I could see it and we could talk about it.

I thought his teachers wrote it and shared it with Howie.

Turns out, Howie wrote this all by himself.

Since writing this social story, Howie has been able to not only sit through the whole Fundations lesson, but be an active participant with his peers.

So at the very moment that I was trying to figure out how to help Howie participate more, he was doing it himself.

Slightly ironic, no?

I know this is just the beginning of this for him. That the more he understands his body and his brain, the more he’ll be the one to express what he needs.

Because it really should come from him, right?

(so grateful to his teachers this year who understand how important this is too)

Baby steps towards self-advocacy for my all star.

“So much to do so much to see
So what’s wrong with taking the back streets
You’ll never know if you don’t go
You’ll never shine if you don’t glow

Hey now you’re an All Star get your game on, go play
Hey now you’re a Rock Star get the show on get paid
And all that glitters is gold
Only shooting stars break the mold” – All Star by Smash Mouth

 

Say You, Say Me at the SPD Blogger Network

My son’s sensory issues are well documented here.

But what about my own?

I’m exploring that at the SPD Blogger Network today.  Come over and read: Say You, Say Me.

And while you’re there, click around.  There are some amazing essays and great do-it-yourself projects to check out.  And maybe you’ll find a moment to write something too?  (I am the editor there…I have some pull…)

Click HERE for the SPD Blogger Network.

 

Peace, Love and Understanding

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

“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

 

Hold My Hand

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…

He did.

“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

 

Home

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

(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

 

Rocko’s Modern Life

This is the story of our dog Rocko.

She wasn’t our dog to begin with.  My mother, father and sister got her when she was just a few weeks old.  She was the smallest dog in the litter and had to stay a while before she could go home with them. Rocko was their fourth dog and the smallest by far.  The only full breed.  A short-legged short hair Jack Russell Terrier.

My sister named her Rocko after the Nickelodeon show “Rocko’s Modern Life“.  The main character was named Rocko and he had a dog.  My sister just combined the two.

She was so tiny.  We purchased a cat collar for her and still had to add another hole so it wouldn’t slip off her neck.

My dad was getting sicker.  In the past, my parents had never let any dog upstairs in the house.  But Rocko came up to keep my dad company and slept on his pillow.

She liked to burrow and seek our warmth and we’d find her under blankets and in laps.  She would just curl up and sleep, resting her head on your feet or your leg.

Over the next year my mother and sister got two more dogs, rescuing them from shelters.

My dad died the November after they got Rocko.

I moved back home.  It was my mother, my sister, me and six dogs.

As she aged, Rocko became more aggressive towards the other dogs.  Apparently this happens sometimes with Jack Russells, but we didn’t know.  We spent a lot of time making sure the dogs were separated when we were out.

I came home one evening.  My mother and sister weren’t there.  All I saw was a trail of blood that looked like something out of a horror movie.  Somehow the dogs had broken through the gates meant to keep them apart.  Rocko had attacked three of the other dogs, two severely.  My mother came home and took the injured dogs to the vet.  The next day, Rocko went there to be sequestered.

She needed to go.

I couldn’t take her.  I was in the legislature living in a hotel half the year and half the year I was home.

Tim and I were dating at the time and in his true white knight fashion he agreed to take her in his house in Massachusetts until we could find a home for her.  A “foster dog” situation.

On a cold winter afternoon, I drove her down to be with Tim.

I called a bunch of Jack Russell Rescue places.  Had a few leads on places with our requirement : no other dogs.

But I couldn’t pull the trigger to let her go.

So she stayed. For 13 years.

There when I moved in…

There when we got married…

And there through the arrival of all three of our children.

Pregnant with baby number one

Rocko would sleep wherever we were but she was particularly fond of under the covers at the foot of our bed.  Until I found a tick in our bed and moved her on top of the covers under her own special blanket.

She was part of my favorite new parent story ever.  Gerry was a terrible sleeper when he was a baby.  I had finally nursed him back to sleep after a long middle of the night awake stretch.  He had fallen asleep on my arm and I had to pee. Not wanting to move him, I wriggled out of my nightgown and went to the bathroom naked.  I tip-toed quietly to the bathroom, did what I needed to do, and walked quietly into the dark.  As I made my way to the bed I heard a huge THUD.

I screamed and flipped the light on, thinking it was Gerry falling off the bed.

It was Rocko hopping down to find me.

Staring at naked me in the bright light was Tim and now a wide awake – and now crying – Gerry.

She is also part of one of my scarier moments as a parent.  A now toddler aged Gerry was jumping around on our bed and landed on her tail.  Rocko turned around and snapped at him.  Not biting, but enough of a reaction that we started the search again for another home for her.  Again, we couldn’t pull the trigger.  But for the next seven years, she was never left alone with any of the kids.  And she never slept on the bed again.

**********

We said goodbye to Rocko last week.

She had dementia.

She would sleep all day and walk around all night.

She had “dry eyes” meaning her eyes didn’t produce tears.  For several years Tim put drops in her eyes to ease the pain, but she was now completely blind.

And deaf.

She had fallen down the stairs too many times because she couldn’t see.

She slept on Tim’s side of the bed on the carpet under his nightstand and never left that spot.

We carried her out to pee. And even then she would pee or throw up in the house.  She peed on her water bowl and barely ate.

She didn’t know when we were there or even sensed where we were.

She was getting worse.

I shook the whole time that Tim was away with her at the vet.

We know she went peacefully.

Her last picture. Excuse my knee in the way.

**********

When Tim got home and the kids were asleep, I sat down with him on the couch and sobbed.  I didn’t even know these tears existed for her.

“It’s like I have nothing left of him now,” I cried into Tim’s lap.  “I have the green chair and the coat and that’s it.  That dog…she…”

I just curled up in Tim’s arms and cried.  Just as I had 14 years ago at the cemetery after burying my dad.

“We’re never getting rid of that chair, are we?” Tim said.

I shook my head no and laughed through the tears.

“I loved her too, you know.” Tim said quietly.  He had been her primary caregiver for 13 years now.  As we had more children, more dog responsibilities fell to him.  This was his pain as much as mine.  We sat together on the couch quietly remembering Rocko.

**********

Telling the kids was one of the hardest things I’ve done as a parent.

I googled “how to tell your autistic child about the death of a pet” and didn’t get much.  The “Rainbow Bridge” poem just doesn’t work for our not very religious, incredibly literal family.

So we told them the truth.

Their reactions matched their personalities exactly.

Gerry said he wished he didn’t have feelings so it didn’t hurt so much.  Howie went between being very sad and saying “poor Rocko” and then saying he was happy he wouldn’t be annoyed by her toenails clicking on the floor anymore.  Lewis got very very sad and kept saying “I am sad that Rocko died.”

They all wanted another dog instantly.

This will be a process.  For us all.

**********

Goodbye Rocko.

You weren’t a great dog.

But you were our dog.

Our memory dog.

I slipped your collar into the pocket of Dad’s coat.

We will miss you.

A huge thank you to the incredible doctor at the Northern RI Animal Hospital for being there for us all. You were my lifeline.

“[Rocko]
Goodness no
[High-Pitched Voice]
Rocko’s Modern Life
[Deep Voice]
Rocko’s Modern Life
{Silly Sound Effects}
[High-Pitched Voice]
Rocko’s Modern Life” – Theme Song to Rocko’s Modern Life