April 2013


Note: While all of my family members are safe, I have friends who are mourning the loss of their hero, MIT police officer Sean Collier.  My love and hugs go to them and all the families who are hurting and grieving today.

It will be one of those moments where people ask you “Where were you when…”

It is Monday, April 15th.  The start of school vacation week.  I take the boys with me to work at the sensory gym while Tim finishes up work.  He always works from home on Marathon Monday because his office is near the start of the race.  He was going to come get the boys when he was done.

My phone starts beeping with incoming text messages.

“Did you see what is going on?” “Are you watching the news?” “WTF is going on?”

I text back that I was at work and with the boys and couldn’t see anything.

“There was an explosion at the finish line.”

I look over at Howie and Lewis, giggling together as they played on the Club Penguin website on the gym’s computer.

I want to throw up.

I start texting friends furiously for information.  We had friends who were running that day.  Family who were going to watch the race.

To a friend: “J?  Is she ok?” “Yes, her husband posted on Facebook that he heard from her.”

To my cousin: “Are you home?  Did you go watch the race?” “We did but we’re home now.”

To another friend whose husband was running: “Hey…just checking in…” “He’s been home for an hour.  He’s fine.”

Tim comes by an hour later to bring the boys home.  I spend the rest of the evening glued to the computer.  While everyone I knew was fine, it was clear there were people who were not.

**********

It is Tuesday April 16th.  We have free tickets to a Pawtucket Red Sox game.  We’re meeting my friends Kristin and Lexi there with their families.  I hadn’t said anything to Gerry yet about what happened in Boston, but I knew I had to.  I knew there would be a moment of silence for the three people who lost their lives on Monday.  I knew someone would say something at baseball practice that night.

Telling him was one of the hardest things I’ve ever done as a parent.  I told him what happened.  I told him they were going to catch the people who did it.

He was more interested in the technology behind how they were going to identify the suspects.  And he reminded me not to believe everything I hear from the government.  “They lied a lot during Vietnam, you know,” he said.  I nodded and walked out of the room.  I made a mental note to pay more attention to the shows he’s watching on The History Channel.

It is a picture perfect day at the park.  Our nine kids blissfully cheered on the PawSox and David Ortiz while doing The Chicken Dance.  They laugh and stuff their faces.  The grownups chat and smile.  For those few hours there was no news, no phone interruptions, no breaking news bulletins.  But I still can’t breathe.

**********

It is Wednesday April 17th.  All three boys are with me at work again in the morning.  There was no update on anything.  Tim was working in Cambridge near MIT. I saw a website with a montage of pictures taken around the time of the bombings.  Again, I want to throw up. I really try to focus on parenting.

Just 40 miles away, a family was grieving over losing their eight-year-old son.

Gerry goes off with a friend to play tennis for the afternoon.  Howie and Lewis play their superhero games.  I hear  “we need to explode that bad guy!” and I lose it.  I start yelling at them to stop – that those words weren’t nice and you can’t play that way and if you say that at school you will get in huge trouble.  I hold back tears. I’m supposed to be holding my kids close and cherishing every moment but I am screaming at them.  The noise inside my own head – my own fears of failing as a parent to keep my kids safe – they are taking over me.

The boys look at me like I’m crazy.

I retreat upstairs to play Candy Crush Saga.  Guilt overwhelmed me.  My kids are safe, healthy, alive.  I can sit and play this stupid game after yelling at them.

I’m on the bombs level in the game.  With each move I make, time ticks away. It feels wrong to be playing this right here right now.

I spend the next hour sitting on the edge of losing my mind.  I watch the clock waiting for Gerry to come home.  I know he’s safe with our friends but he’s not under my roof in front of me.

Everyone I love makes it home safe that day.  I spend a lot of time alone in the bathroom just needing space.

**********

It is Thursday April 18th.  We’re stuck at home today because both Howie and Lewis have their home therapy.  I scheduled it on purpose at the same time so I’d have a break.  However, it becomes clear that Howie has picked up on the stress – my stress – in the house and he can’t handle the noise of the two therapists talking to each other while he’s working on his stuff.  He grabs his headphones from his school backpack and retreats upstairs to his bed.  I walk in to see him under his weighted blanket, headphones on, fiddling with the tag on his stuffed dog.  I am both proud of him for finding a strategy that worked and sad that he’s feeling this overwhelmed because of me.  I snuggle with him for a bit.  We’re both quiet.  I try not to cry.

I take the boys with me to work again in the afternoon.  Tim comes to get Lewis and Gerry but I let Howie stay with me until we close.  He spends most of the time in the quiet sensory room watching the bubble tube.  We stop for french fries on the way home.

That night, they release the photos of the suspects.  I watch the news for a while until Tim makes me turn it off.  I fall asleep just wanting this all to be over.

**********

It is Friday, April 19th. I wake up to my phone buzzing again.  “Are you watching this?” is the Facebook message I get from a friend.

I’m fuzzy on the context of the message.  Is this from last night?  From this morning?

“Turn on the news.”

I do.  There’s been a shoot out with the suspects.  One of them is dead, one is on the run.  A MIT police officer is dead. Boston and all surrounding towns are on lockdown, told to “shelter in place”.  I have friends and family told to close their shades and lock their doors and not leave.  I ask Tim not to go to work until it’s safe.  It’s a ridiculous request as we’re miles away from what is going on but my panic level was through the roof.  He gives me a look and tells me he’s going to work.  I have to tell Gerry what’s going on because he has tennis camp all morning and I don’t know what kids know what information.  I text a friend and ask her to take him to camp because I can’t get my act together to get everyone out of the house on time.  Gerry takes his time getting ready.  I hand him his SenseAbility Gym shirt to wear to tennis and he refuses, saying it’s only for when he’s at the gym with me.  I scream back “It’s a FREAKING shirt.  Just wear it!”

Another friend graciously takes Howie for the morning so I’m down to just one kid.  Lewis and I go out for breakfast and the local news is on a constant loop of no new information.

A few hours later, Lewis and I walk down to get Howie.  It’s the last day of April vacation and it’s gorgeous outside.  The street is deserted, totally quiet.  No kids are out playing.  We aren’t one of the towns on lockdown but everyone is inside.  We pick up Howie and start the walk back to our house.

In my head swirls the words that a friend posted that morning on Facebook.  She wrote: “As I sit here listening to my little one playing space shuttle with his cars & (my other son) upstairs working on his pretend bookstore, I wonder what happened in those awful men’s lives that would change them from the innocent little boys they must have been. As my children’s grandparents sit in their home on lockdown hearing helicopters fly above, and so many men & women in blue are risking their lives, I will never, ever understand what could have been so important that those men felt it necessary to take innocent lives & create such chaos. Peace & love, peace & love, peace & love – it has to prevail. ♥”

And that’s where this is for me.  It feels self-indulgent to write all this.  None of this happened to me, to my family. There are four families who are grieving their loved ones, two hundred families changed forever by being at the right place at the wrong time.  But as a parent…this is hitting my soul.

I remember feeling scared and worried on 9/11, but I wasn’t a mom then.

Everything is different.  I am afraid not only for the safety of my children now but for what could happen to them in the future.  How do I teach them right and wrong?   How do I parent them and keep their path safe?

**********

I watch my boys walk together down the street.  They are hand-in-hand.

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Their innocence is still in place even though mine is gone.

They are talking about the giant cookie that Howie made with my friend.

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My anxiety wants me to keep them close.  To never let them go to school, to the movies, to an outdoor event.

They make plans to eat the cookie for lunch and ride their bikes in the driveway when we get home.

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I can’t let my fears eat us alive.  I need to give them the tools to grow, be independent, be good people. To become the Sean Colliers of the world.

They stop at the end of the sidewalk before crossing the street.  Together they recite the rules.

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“Peace & love, peace & love, peace & love – it has to prevail.”

It may be the end of my innocence, but it can’t be the end of theirs.

“But I know a place where we can go
That’s still untouched by men
We’ll sit and watch the clouds roll by
And the tall grass wave in the wind
You can lay your head back on the ground
And let your hair fall all around me
Offer up your best defense
But this is the end
This is the end of the innocence” – The End Of The Innocence by Don Henley

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photo credit Fox Boston

photo credit Fox Boston

Before I graduated from high school, I knew I wanted to live here.

When I graduated from college, I moved to Cambridge with my cousin.

I can drive the confusing and convoluted streets of this city better than any New York City or Washington D.C. grid.

I have walked The Freedom Trail with my son. Stood on the streets where history was made.

I have lunched in the outdoor cafes on Newbury Street.

Watched my favorite bands play on Landsdowne Street.

Jaywalked across Mass Ave.

The Red Sox are my team.

This city is my adopted home.

No one – NO ONE – will take that away.

Ever.

Well I love that dirty water
Oh, Boston you’re my home (oh yeah)

‘Cause I love that dirty water
Oh, Boston you’re my home (oh, yeah)” – Dirty Water by The Standells

So I almost said no.

I’m pretty gun shy when it comes to blogging events, especially ones for my kids. My social anxiety spikes and my nervousness about their behavior and their sensory needs and their everything else usually turns into a “thanks but no thanks” email back to the event planners.

But when I got the message about a PBS Kids event in Boston at WGBH, I knew I couldn’t turn it down.  It was about their new initiative called “It All Adds Up“, designed to bring math and literacy skills into homes all over the world through their online programming and apps.

This is an event made for my kids.

Still, I was nervous.  So nervous that I almost backed out.  The first half of the event had parents in one room hearing about the new programs while the kids were right next door doing activities, crafts, etc.  That can be just so unpredictable for Howie and Lewis.

So I sent this email:

Hi! It will just be two of my boys ages 7 and 4. I hope that is okay.
Just a heads up, my two boys are both on the autism spectrum.  They love math and science and all things PBS but they get nervous and a little overwhelmed in large groups and with characters in costume. As long as I can be nearby for them, they should be okay. But please let me know if you are uneasy about having them there.
Thank you!

Alysia

I hate sending that email.  Not because I am ashamed of my kids.  But I am always worried about the response back.

But being PBS, I guess I should have known it would be okay:

Thanks for the email Alysia. A Curious George character will be present at the event – greeting people at the door, and then coming out again at the end. You can definitely just walk past and I can let my colleague at the door know. There will be a time when the parents are in an adjoining room listening to a presentation while the kids are playing games and activities in the other room. Do you think that will be ok? We expect approx 30 kids and 20 adults.

We’d love for you to be there. I just want to be sure you have all the info about the event so you know what to expect. Let me know your thoughts and if there’s anything we can do to help.

That’s all I needed.  I could prep them for exactly what was going to happen.  And I had an exit strategy if needed.

So off we went.

We got on the highway around 10am, armed with munchkins and juice boxes. I usually turn on a movie or the radio for the boys but I didn’t want to be alone with my thoughts.

So we talked.

We laughed at the leprechaun hat that is the symbol for the Mass Pike.  We discussed what “Mass Pike” actually meant.  We counted the Jersey barriers along the side of the road and made believe we were racing the big trucks.  We squealed with delight as we went under the “cool hotel that makes a bridge over the highway”.

We shouted and pointed at the large building with the Word Girl animation on it.  I told them that was where we were going.

Their excitement was growing.  My anxiety was almost gone.

We bounded our way into the WGBH building and were immediately greeted by Curious George.  Lewis stood behind me.

Howie went right up to him and gave him a big high-five.

In the elevator, he turned to me and in an exaggerated whisper he said “that was just a guy in a costume, you know.”

I knew we’d be okay.

We entered the room to check in.  The boys got name tags with their names written in their favorite colors.  The room was filled with coloring pages, games, activities and kids.  A giant TV on the wall was showing Curious George.

A lovely young lady motioned for them to sit with her and play.  And they did.

My fears about the event now gone, I found a seat in the presentation room.

I shouldn’t have been surprised that PBS and the Corporation for Public Broadcasting were doing so much for kids in the area of math, science and literacy.  But the approach they are taking is truly remarkable.  By creating content online that complements their TV programming, they are engaging kids in a whole new way.  We learned about a new show called “Peg + Cat” which is all about math skills but taught in a humorous and approachable way. And written on a level that both kids and their parents can find interesting.  Example : a reference to turning up an amplifier to the number 11 – a slight nod to Spinal Tap that had me and my friend Jessica giggling.

What really got me though were the online games and apps targeted exactly at my kids.  Apps for Martha Speaks, Wild Kratts, Dinosaur Train and Cyberchase and games for Curious George. My kids’ shows.

When we left the presentation, we got to see the games and apps in action.

Howie is very new game phobic.  He is afraid of trying a new game or app because he is hyper-competitive and worried about losing.  “No, thank you.” was the response I got when I asked if we should try the new Curious George Bubble Pop game.

But Lewis?  Drawn to games like…like a kid who loves iPads and computer games.

Playing Curious George Bubble Pop.  And yes, that's a breadstick in his hand.  We mutli-task.

Playing Curious George Bubble Pop. And yes, that’s a breadstick in his hand. We mutli-task.

The premise of the game is that when you see a bubble on the screen, you yell “Pop!”.  And it pops.  George gives a little squeal and counts the numbers of bubbles that have popped.

No mouse.  No keyboard.  And you don’t even need to say “pop”.  You can clap your hands or make any noise and the bubble pops on the screen.

It only took 10 bubbles popping before Howie joined in too.  For a few minutes, they were both yelling “POP!” at the tops of their lungs.  And each time Howie jumped up and down with delight.

Yelling POP!  Because it's okay to yell sometimes.

Yelling POP! Because it’s okay to yell sometimes.

Instantly I saw the beauty of this game for kids like mine.  No fine motor control needed.  No speech.  And online for free.

This game teaches cause and effect, counting, and math skills without having to say a word or navigate a mouse or keyboard. All accessible anywhere on any computer with a microphone.

As my kids were yelling “POP!”, I made my way over to the woman representing PBS.

“I can’t thank you enough for this,” I said.  “This game is really perfect.  My two kids are on the autism spectrum and for them to be able to navigate a game flawlessly without specific words or the mouse is just incredible.”

There’s a chance that I caught her a little off guard.  But as she looked over at my kids smiling and jumping, I could see that she got it.  “Thank you,” she said. “That means a lot to us.”

Next, we made our way over to the Wild Kratts app on the iPad.  Howie got to show off his math skills as he fed the animals in the forest.  Lewis honed in on the Dinosaur Train app.

I had to drag them out of there.

I tweeted:  Going right to http://pbskidslab.org  when we get home #pbskidsaddsup

And we did.

That night, Howie and I were sitting on his bed before bedtime.  We were playing the Martha Speaks “Word Spinner” app that we had learned about that morning.  I have never seen him so engaged in an educational app before – laughing, smiling, waiting for his turn…excited for his turn.  Yesterday, he played it with his home therapist, squealing the same squeal of delight that I heard at the event.

Every time the WGBH logo comes up on the screen Howie says “WGBH!  We went there!”

I am so thankful I didn’t say no.

Update from 3:15pm : I went outside to get the mail. I came in and Howie and Lewis were playing the Martha Speaks “Word Spinner” app.  Together.  Taking turns.  Nicely.  Smiling.  This NEVER happens. This is huge.

Disclaimer note: We were given free app codes for Cyberchase 3D, two Martha Speaks apps, two Dinosaur Train apps and the Wild Kratts app.  Considering how much my kids love them, I would have spent the money anyway.  We were also shown another Curious George online game called Monkey Jump – another game where no speech, keyboard or mouse is used.  You jump and Curious George jumps.  All you need is a webcam.  Perfect for my kids.

“Somebody come and play
Somebody come and play today
Somebody come and smile the smiles
And sing the songs
It won’t take long
Somebody come and play today

Somebody come and play
Somebody come and play my way
Somebody come and rhyme the rhymes
And laugh the laughs
It won’t take time
Somebody come and play today” – Somebody Come And Play from Sesame Street

I watch him carefully as he speeds by me.

His training wheels clank-clank as they hit the uneven pavement in our driveway.

He’s doing laps on a track he made out of chalk.  One big circle.

Around and around and around.

I’m sitting in my winter coat on a beach chair on our lawn.  It’s the first nice day of spring but there’s still a chill in the air. His brothers have gone in for the day but Howie refused.

“I’m not done”, he said.

So neither was I.

Understanding

Understanding

I think about Autism Awareness Month.  Or Autism Acceptance Month.  Or Autism Awareness/Acceptance Month.

I think about the posts I have written in the past.  What it mean to us to “Light It Up Blue“.  Why I share what I share.

I think about what the words awareness and acceptance really mean.  I mean really really mean. And whose awareness?  Whose acceptance?

Globally? Nationally? In my town?

Awareness

Awareness

Howie stops for a moment and gets off his bike.  He surveys the track.  I can see it in his eyes that something is missing.  Something about the track is not quite right.

I can’t see it.  To me, it is perfect.  The lines may not be straight, the arrows showing the right path are jagged.

But still…perfect.

His eyes see things I can’t.  His mind works differently than mine.  He can create elaborate pictures and structures in his head and put them together with Hot Wheels Tracks, Legos, blocks and chalk.  I can’t draw anything but a stick figure.  I can sit through a two hour lecture on the history of New York’s geography.  He can’t sit through a five minute lesson on contractions.

I am aware of this.  But is he?

Howie adds one more line to the track and colors it in.  He hops back on his bike and the circles begin again.

Acceptance

Acceptance

I know the statistics.  The 1 in 88 or 1 in 50.  Or in my house…the 2 out of 3.

The answer to the question of whose awareness and whose acceptance is easy for me this year.

It’s Howie.

We’ve started talking about how his brain works differently than others sometimes.  How some things are harder for him at school and somethings are easier.  We’ve talked about sensory overload and calming our engines and using his sensory toolbox to help his body feel better.

But…we’ve never given it a name.

Up to this point, we have been his advocate.  I have piles of papers and notes and spreadsheets and doctors’ reports that speak for him.

It’s time to teach him how to speak for himself.  How to advocate for what he needs and why.  Not to escape the hard work or to use as an excuse.  But to truly understand what makes him successful.  What makes things challenging.

So if a kid makes fun of him for flapping his arms up and down when he’s excited, he can say why he does it.  Or if an adult makes him look at them in the eye he can explain why that’s hard for him. Or when he creates the most incredible stories and drawings he can explain why his brain works the way it does.

Or when he just needs to ride his bike around in circles for an hour before dinner he knows why it makes him feel happy.

His older brother Gerry has accepted it.  Tim and I have too.  We can share our version of Autism Acceptance Month as parents and siblings.

But the understanding/awareness/acceptance needs to come from within too.  From Howie himself.

We will light our house up blue and wear our blue clothes tomorrow.

And slowly…in our way and in our time…Howie will understand that we’re doing it for him and with him and his younger brother.

Awareness and acceptance will begin at home.

And then Howie can be the one to share it with others.

Free

Free

He zips by me again for the 100th time.  The early spring wind is starting to kick up and I start to shiver.

I ask him to pause for a moment so I can take a picture of the first bike ride of 2013.

He stops, smiles, and poses.

“What are you thinking about?” I ask.

“I’m thinking about being me,” he replies.

And he speeds away.  The clank-clank of the training wheels follow behind.

Awareness.  Acceptance. Understanding.

Starting locally.  So he can share globally.

Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by

And I’m gonna go there free

Like the fool I am and I’ll always be
I’ve got a dream, I’ve got a dream
They can change their minds but they can’t change me
I’ve got a dream, I’ve got a dream
Well, I know I can share it if you want me to
If you’re going my way, I’ll go with you

Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by
Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by.” I Got A Name by Jim Croce