Under Pressure

(Three of two posts about Father’s Day.  Yes, I know.  Math is not my strongest subject.  Moving on…)

Tim was heading out the door for work.

I said my usual “Guys, say goodbye to Dad.”

“Bye Dad!” calls Gerry.

As the door shuts, Howie says “Oh good.  I am glad Father’s Day is over.”

“Hey, Howie, don’t be mean,” I snapped.  “We’re nice to everyone every day even when it isn’t Father’s Day.”

He was silent.

I continued to get the kids’ stuff ready for school but the statement kept rolling around in my head.

It just wasn’t sitting right with me.

Not his statement.  Mine.

I sent some friends a message:

As Tim left this morning, Howie said “oh good. Father’s day is over.” At first I thought he was being mean. But maybe the pressure of father’s day is what made him so out of sorts yesterday? I know I was on edge.

I thought back on the whole day yesterday.

Howie up at 3:30am.  Climbing into my bed and trying to climb under me.

Telling him when he woke up that it wasn’t nice to kick Dad out of bed on Father’s Day.

The strings of silly words and refusal to eat any food, only yogurts.

Reminding him to say “Happy Father’s Day” to Tim.  Prompted three times before he said it.

Asking to go outside in his pajamas at 8:30am to go swing on the swings.  Alone.  For 25 minutes.

Telling him we had to be on our best behavior while at work with me with all the dads coming in for Father’s Day.

Playing solo at the sensory gym with his own game.  Ignoring the other kids that he usually plays with.

Reminding him we were giving Dad space and alone time for Father’s Day so we were going to the store/farmer’s market/park.

Holding in a poop at the park because he wanted to stay there and not find a bathroom.

Telling him we couldn’t go back to the park after the bathroom because it was Father’s Day and we were going home to spend time with Dad.

My friend wrote back:

And it IS a lot of pressure… ‘it’s father’s day… be nice to dad, give dad a hug, we have to make x for dad…’ Whether it’s father’s day or a birthday or any other out of the ordinary day, it’s tough. I’m quite sure Howie was not being mean at all.

You would think at some point I would get this – truly get this – for Howie.  Clearly, I had anxieties about Father’s Day.  The split between wanting to make it special while also wanting to dive under the covers and hide.  In an attempt to make it the best day ever for Tim and forget why it was the hardest day ever for me, I whisked my kids out of here for the day. Out of their routine, out of their house, and ultimately out of sorts. The whole time telling them it was in the name of Father’s Day. The exact opposite of what I was trying to accomplish.

And so in one short honest sentence, Howie snapped it all back into focus for me.

Not mean.  Just the truth.

He wasn’t saying he wanted to be rude to Tim now that Father’s Day was over.  He was saying that it was too hard yesterday to hold it all together to be over the top perfect.

The pressure that was too much for me was too much for him too.

We’re back to our version of normal today, Howie and I.

Someone remind of this next year.

“Cause love’s such an old-fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure” – Under Pressure by David Bowie

 

Head Over Feet

(One of two parts of a Father’s Day)

Because you are always there.

Because you see what I miss.

Because you haven’t missed a baseball practice.  Or game.  Or school show. Or IEP meeting.

Because you read the reports and read between the lines.

Because you enjoy being the “mystery reader”.

Because when I find only the negative, you show me the glass half full.

Because you understand what “he’s out of sorts” means and how to help.

Because you understand our kids in ways I can’t.

Because you get it.

And when I am done

and can’t read one more report, one more home log, one more email

or change one more diaper, fight one more clothing battle, listen to one more scream

You are there.

Not out of obligation.

But out of love.

Showing our kids what a dad should be.

And for that and eight million other reasons.

I love you.

Happy Father’s Day to the man who makes every day better.

“You are the bearer of unconditional things
You held your breath and the door for me
Thanks for your patience

You’re the best listener that I’ve ever met
You’re my best friend
Best friend with benefits
What took me so long

You’ve already won me over in spite of me
And don’t be alarmed if I fall head over feet
Don’t be surprised if I love you for all that you are
I couldn’t help it
It’s all your fault” – Head Over Feet by Alanis Morisette

 

Reading Rainbow Revisited

On  July 17,  2011, I wrote a post for Hopeful Parents titled “Reading Rainbow”:

I’m on a frantic search through the boys’ bookshelves.

My husband is reading a Frog and Toad story to our youngest, our two year old.  They are laughing together through the story.  My husband calls to me, asking where the other three Frog and Toad books are.  He knows we have them – we used to read them to our oldest son when he was two.

I’m looking everywhere but I can’t find them.

My eyes fill with tears as I realize that the books are probably packed away somewhere.  Buried in a box with all of the other stories that we tried to read to our middle son Howie.  Stories that he never showed any interest in.

Quietly I tell my husband that I can’t find them right now.  I turn away before he sees the tears…

All three of my boys have bookcases in their rooms.  Every shelf is filled.  I never say no in the bookstore.

My oldest and youngest have books strewn all over their bedroom floors.

My middle son – his books have been in the same place for…years.

I can’t remember the last time he took a book off his shelf and brought it to me to read.

We’ve tried.  He won’t sit for a story.  If I’m reading to his younger brother, he’ll come over to listen sometimes.  But he never initiates it.

When he was younger, he’d sit for a story with my husband.  They had two books that they would read, Hondo and Fabien and Night Driving, both by the same author.

But then things changed.  Was it that he couldn’t sit still for them anymore?  Or did his obsessions and sensory issues get in the way?  Is it the autism or did we get so busy with helping him with everything else that reading just fell by the wayside?

Snuggling in for a story is not part of his routine. He’s just not interested…

Still, I can’t help but hope for that day when my son takes a book off the shelf and says “would you read this to me?”

It’s that hope that keeps me on the hunt for those missing Frog and Toad books.

**********

On May 7, 2013 I sent Howie’s teacher an email.

My teacher appreciation gift…Howie wouldn’t go to bed tonight because he wanted to read “diary of a wimpy kid”.

I never thought those would be words I would write.

Thank you for teaching him to love to read, to learn, and to appreciate the details.

Alysia

P.S. he may be a little tired tomorrow

And I sent her this picture.  It’s where I found him while he was waiting for his turn for a shower.

And then this one in his bed that night.  Reading until 9:30pm:

My eyes filled with tears again.

And now I am back on the hunt for those still missing Frog and Toad books.

“Butterfly in the sky
I can go twice as high
Take a look
It’s in a book
A Reading Rainbow
I can go anywhere
Friends to know
And ways to grow
A Reading Rainbow
I can be anything
Take a look
It’s in a book
A Reading Rainbow
A Reading Rainbow” – Reading Rainbow TV Show Theme Song

 

Tears in Heaven

Instant panic.

That feeling you get when you turn around and your child isn’t there.

I could tell you about the time when we were in a hotel near StoryLand in New Hampshire.  Howie was three.  We were staying in one of those two room suites where you could close off the bedroom from the other part of the room.  I had baby Lewis ready for the shower, and I went into the bedroom part of the suite and handed him into the bathroom to Tim.  Howie and Gerry were in the other room. Gerry was watching a Red Sox game on the TV.

I come out of the bathroom and Howie is gone.

“Howie?  Howie?  Where are you?”

No answer.

I check in the closet.  The drawers.  Behind the table. Is he hiding from me because he doesn’t want a shower?  Playing a game? Both rooms together are about 700 square feet.  He’s nowhere.

“Gerry!  Where is Howie??”

His eyes shift to me from the TV.  “I don’t know.”

“Howie!!  Howie!!”  But I know full well he won’t answer to my screams.

After what seems like a lifetime, I notice that the door to the room is slightly ajar.  I run out into the hallway.

At the end of the hall I see Howie.  In nothing but a pull-up.  I grab him just as a man comes out of his hotel room.

“I looking for you.” he said.

He was trying to find where I was when I went into the bathroom.  The door to the hallway looked like the door to the bedroom in our hotel room.  He opened the wrong one and left.

**********

I could tell you the statistics.  This from the National Autism Association: “a study released in Pediatrics showed that 49% of children with autism like Mikaela are prone to wandering, a rate four times higher than their unaffected siblings. This indicates that this is not an issue of bad parenting. From 2009 to 2011, 23% of children who died following a wandering incident were in the care of someone other than a parent”

I could tell you that I know I am lucky that my kids aren’t bolters. For the most part they stay with me in unfamiliar and familiar places.  But they lack impulse control.  They don’t answer to their names when called.  And all it would take is that One. Split. Second.

But there are many children who do run.  With no sense of fear or danger.  Kids that will follow a butterfly down to a creek or decide it’s time to leave and get in the car and lock themselves in.  These are  my friends’ stories.  And their friends’ stories.

I could tell you that three little ones lost their lives this week after wandering and drowning.  Three.

But instead…

To honor Mikaela and Owen and Drew I am doing one thing today.

I am printing out the First Responder profile form for my kids and bringing it to our local police and fire departments.  It’s on page 10 of this PDF.

It has questions like: Other Relevant Conditions (other than autism): _ No Sense of Danger   _ Nonverbal    _Attracted to Water    _Seizures

It has a info sheet with tips for searching for an autistic child and how to interact with a child once found.

It has a spot for a recent photo.

It’s one more layer of protection for my boys.

I urge you to do the same for your child too.

My heart is with the Lynch, Black and Howell families today and always.  We are with you.

“Would you know my name
If I saw you in heaven?
Would you feel the same
If I saw you in heaven?
I must be strong and carry on
Cause I know I don’t belong here in heaven” – Tears in Heaven by Eric Clapton

Many special needs bloggers are joining together today to bring comfort to the families and to shine a light on autism and wandering.  To read them, click HERE for the link up at Adventures in Extreme Parenthood

 

Take It To The Limit

Two different kids.  Two different scenarios.

Same internal parental struggle.

**********

Part One

In Howie’s first grade class, the kids take a math timed test every Friday.  They start in November with what they call “little plus” questions.  It’s 50 addition problems on a sheet, adding numbers from 0-10.  The kids have three minutes to complete the 50 questions correctly.  The goal is, of course, to learn and practice their math facts.

I knew from the beginning that this would be a big challenge for Howie.  I even mentioned it at his kindergarten to first grade transition meeting last May.  It’s not that he couldn’t learn the facts – his academic abilities have never been the issue.  It’s the processing speed.  And the fine motor skills for writing the numbers quickly.  And the anxiety.  And his highly competitive drive.  All of these issues had the potential to come together in a perfect storm of frustration and meltdown for him.  I thought this was a recipe for disaster for him, that there was no way he could answer all the questions in that time limit.  Nor did I think he could handle seeing the other kids complete the task when he couldn’t. Immediately I suggested we think of accommodations for him for the test.  I even bought a book called “Last to Finish: A Story About the Smartest Boyin Math Class“.

“Let’s wait and see how it goes,” was the response back.

Every week he tried that test.  Sometimes he’d complete 39 of them with the answers all correct.  Other weeks it was 42 with a few wrong.  One time he completed the whole sheet but had three wrong.

Every week he tried.  No meltdowns, no frustrations.  His aide and teacher worked with him on calming techniques before the test and during the test and they had him stand up in front of the class to teach the other kids how to stay relaxed during a test.  They taught him where he needed to be by one minute and by two minutes to complete the sheet.  They practiced outside of class and sent home sheets for us to practice at home.  He never mentioned if the other kids had moved on to the next “little minus” sheets.

Every week he tried.  And every week he came up just a little short.

At the beginning of April I mentioned to his teacher that maybe we need to rethink the accommodations again.  “We know he knows the facts.  He just can’t get them out fast enough.  It has to be affecting him, doesn’t it?  Even if he’s not verbally expressing it?”

He just couldn’t do it.

Until…

He did it.

He came bounding off the bus that Friday afternoon.  So full of pride.  “I DID IT! MOM!  I DID IT!  I MOVED ON TO LITTLE MINUS!”

He jumped into my arms for the best real hug ever.

**********

Part Two

Spatial relations have never been a huge strength for Lewis.  He doesn’t have a very good sense of where his body is in space – meaning he will often misjudge how close he is to a door handle or a corner on a counter top and walk into it or take a misstep and fall.  It’s clear he gets this from me, as I have misjudged the amount of space between my side view mirrors and the opening of the garage.  Three times.  I can never accurately tell how close I am to the curb when parallel parking.

Lewis and I also don’t like the feeling that we’re going to fall.  For example, he’s very uneasy walking on a bridge on playground that you can see through.  I don’t like climbing stairs that are open.

Lewis was especially afraid to sit up on a swing.  He would lie down on his belly on a swing with no problem and fly.  But sitting upright?  Nope.  No way.

So I talked with his home ABA therapists about it and we made it a goal.  He needed to learn how to swing.

He protested.  A lot.

They started small with just sitting on the swing for a few seconds with the therapist behind him.  The next time he’d sit a little longer.

Each time they’d say “It’s time to swing” he would say no.  But then he would.  For little bits at a time.

Several weeks of this passed.  He just refused to sit there by himself and he melted down at the suggestion of a gentle push without someone holding him on the swing.

Until…

He did it.

“MOM!  MOM!  I DID IT! I DID TWELVE PUSHES ON THE SWING!”

He wrapped his arms around my legs and looked up at me with the biggest smile.

**********

Herein lies the struggle.

And this is the part that is hard to admit as a parent.

With Howie, I had decided he couldn’t do something.  Everything about that testing scenario spelled trouble for him. I looked at the parts of his disability – the hyper-competitive nature, the inability to sit for that amount of time and attend to a task, the fine motor issues, the processing speed – and I decided he couldn’t do it.  I knew he knew the answers and I wanted him to show the teacher that he knew the work without the interfering behaviors that keep him from showing he knows the work. Did he need to show that he knew the answers in the same way that every other kid in the class did?  How many times did he need to not complete the task to show he needed accommodations?  And did we need him to “fail” before we changed it, or was it better to start him off differently from the beginning?

But he could do it like they did.  Yes, it took him until the end of April.  But the pride – the glow of accomplishment that he showed – would that have been there if he was doing the assignment differently than anyone else?

So where do we step in?  When do we say he needs to do it differently than the other kids?  At what point do we acknowledge that “different, not less” is okay?  Do we wait until Howie is self-aware enough to say “I can’t do this I need help” or I do decide that for him?

Now with Lewis it was the opposite.  I pushed for him to work through something that was uncomfortable for him.  He was uneasy, afraid, and unsure of himself on that swing.  But I asked the therapists to help him overcome it.  I decided he needed to learn how to swing.  Was that wrong?  Would it be so bad if he never sat up on a swing?  I am afraid of rollercoasters and any ride that spins.  Would it be acceptable for Tim to hire a therapist to make me go on a rollercoaster because everyone else does?

So what do I do? Where do I push?  When do I intervene?  When do I just let it go?

When we cross off a goal on an IEP or home program, we call it progress.  But at what cost?  Or whose definition of progress?

I want my kids to reach the next levels – to achieve the things I know they can achieve and more. To reach their limits and then feel confident to step over that line.

But more than anything I want them to be happy.  I don’t want them frustrated, scared, upset or angry with me or school.  Or life.

I need to figure out where my limit is too.

“So put me on a highway
And show me a sign
And take it to the limit one more time

Take it to the limit
Take it to the limit
Take it to the limit one more time” – Take It To The Limit by The Eagles

 

Somebody Come And Play

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.

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.

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 Got A Name

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

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

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

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

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

 

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.