February 2012


I’m not even sure where to start this post.  I’m still in awe.

Yesterday, Gerry came up to me while Howie was taking a “break”.  That’s what we call his time in his room when he’s just out of control.  He needs to have the quiet alone time to regroup before he hurts himself or someone else.

“Can I talk to you a second, Mom?”

He pulls me aside, quiet and respectful.  Again, he doesn’t want his brother to hear.

“I was watching a Brain Pop video about autism.  And one about ADHD too.  Does Howie have ADHD as well?”

I explained that he didn’t have an ADHD diagnosis…yet.  But we know that he has difficulties with attending in class and that he can get hyperfocused on one activity, so some of what the movie talked about would sound like how Howie behaves.

“Well, the movie said that people don’t outgrow the autism or ADHD.  That they have some of the same difficulties once they become adults.”

Yes, that’s true, I said.

Gerry lowered his voice and looked right at me.  “What’s going to happen when he’s thirty?  They don’t have ‘time outs’ when you have a job.  You just get fired.  And…” his voice wavered a bit. “I’m worried about that for him.”

I thought about my friend Jess and the conversation she had just had with her daughter.  Was he worried for Howie or worried that he’ll be the one taking care of him?

It will be okay, I said.  That’s why he has his home therapists coming in all the time.  That’s why he has one-on-one aides helping him now.  We’re doing a lot for him now to teach him coping strategies to help him in the future.

“I’m not sure it’s working,” he mumbled, as he walked away.

**********

Later that night, Gerry calls me in to his room.  He wants to show me his latest “invention”.

“I made a ‘green choice/red choice’ meter,” he said, alluding to the words Howie’s school uses for appropriate behavior (green choices) and inappropriate or dangerous behavior (red choices).

“Look.  I made a scale of green choice squares – dark green and light green.  Then I made a yellow square in the middle.  That’s to tell him to slow down and take a ‘balloon breath’.  Then I have light red for red choices and dark red for dangerous choices.  I have an arrow that I attached with velcro so you can move it depending on the type of choice he’s making.  That way he can see and change it himself.”

Making the 'choice-o-meter"

Uh, wow.

“Can I show him?” he asked.

Of course, I said.  But I’m the one who tells him if it’s a red choice or green choice.  The feedback has to come from me, not you.  It’s not your job to correct his behavior.

Gerry called Howie in to his room, which is a miracle in itself.  Usually, the place is off limits to his brothers because of past Lego smashing incidents.

Gerry explained the “choice-o-meter” and how it worked.

Howie LOVED it.

maybe a little too much

After this, they made a “Tell-You-What-To-Do-In-The-Shower 3000″. Together. It was a four step illustration of how to take a shower, from getting undressed to turning off the faucet.

we may watch too much "how it's made"

Howie jumped up and down and begged to take a shower right at that moment.

**********

Tonight, right before dinner, Gerry came down from his room with an idea for “invention #3″.

“I know Howie has a hard time sitting down at the table to eat dinner.  I made a treasure map for him.  I want to put velcro on the map for him to put stars on for every bite that he eats.  And then he makes it to the ‘treasure chest’ – dessert.  I just don’t know how many stars to put on.  Twenty?”

Let’s start with seven, I said.  Just to see how it works.

“Perfect!”  Gerry ran off back to his room.  My calls of “don’t forget you still have homework to do!” were completely ignored.

Fifteen minutes later, he came down with this:

Arrgh! You will eat your dinner!

The map starts with all the stars off, and with each bite Howie takes, he puts a star on the map.  But be careful as you go near “Skull Rock” and “Pirate’s Pond”.

Howie’s behavior therapist happened to be here tonight, so I had Gerry show it to her.

She was blown away.

We’ve spent months trying to figure out how to get Howie to eat…anything.

We sat at the table for a pasta dinner.  Something Howie will never eat.

Gerry and the therapist explained the map to him and put it by his plate.  I told Gerry to let Howie’s therapist be in charge of the map and stars so that Gerry could just eat his dinner.

Fifteen minutes later, all the stars were on.  One piece of pasta at a time.  But he ate it.

I’m not sure which kid was more proud.

**********

I have no idea what spurred this on.  Maybe it was the Brain Pop video.  Maybe it’s Gerry’s need to try to “fix things”, just like his dad.  Not cure, but make it better.  Through inventions and ingenuity.

Or maybe it’s just purely out of love for his brother.  The overwhelming love that makes him want to help his little brother succeed in life.

Whatever it is, I know they will be okay.  It won’t always be pretty.  Or perfect.  Or easy.

But they’ll have each other.  That I know for sure.

So much has changed
So much has happened these years
Still find you are waiting here
We have a bond that nothing can change
And still I find a peace of mind
Whenever I hear your name

I find my brother in there
Here in my heart
I find my brother in there
Holdin’ my arms
I love you” – Brother by Toad The Wet Sprocket

notes from an Open Sensory Gym afternoon…

The boy sat in the giant red swing.  It was in the center of the room, swaying back and forth on the rope attached to the high ceiling. His mother (grandmother? caregiver?) pushed him back and forth.

This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

The boy jumped out of the swing and went up to each adult in the room.

This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

An hour passed.  He went from swing to trampoline to scooter board to crash pad.

This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

My friend and I answered him each time.  Of course we did.

His mother (grandmother? caregiver?) started to yell at him.  “STOP Adam STOP!” she yelled from across the room. She looked embarrassed.  Or weary.  Or both.

It made me sad.  If there was any place that this would be fine – and understood – it would be in this gym.  He wasn’t bothering anyone.  Why tell him to stop?

Was it out of habit?  Or was she truly worried about what we thought?

I wanted to tell her it was okay.  That he could just “be” here.  But I didn’t. I don’t know why.

**********

After checking out most of the equipment in the gym, Howie gravitated towards a large purple therapy swing that was full of balls.  He climbed right in, zipped himself up and asked me to swing him around.  “Faster! Faster!” he yelled to me.  In a place like this, I could give in to his need to spin, spin, spin.

A little boy came over and helped me push Howie around.  Howie squealed with delight.  The boy introduced himself as Zachary and they ran off to play together.  Really play.  They climbed up on the crash pad and pretended they were jumping out of airplanes.  They sat together in the giant tires and pretended they were in spaceships.  As they ran from thing to thing I struck up a conversation with his dad.

“How old is he?” I asked.

“Five and a half.” he replied

Oh, Howie is too.  Well, he’ll be six in March.”

The dad paused for a moment, looking intently at Howie.  “He’s not autistic, is he?”

I was totally taken aback.  Isn’t that why we’re all here?  “Yes, yes he is.” I say.

“Oh, wow.  But…he talks so well! I assumed he was here with a sibling, like Zachary is here with his younger brothers.  His twin brothers are four.  They aren’t talking…yet.” His voice trailed off.

I told him Howie had a diagnosis of PDD-NOS.  He looked at me like I had three heads.  “It’s part of the autism spectrum.” I replied.

It struck me that even within our own community not everyone understands that it’s a spectrum.

We talked some more about how tough it is for Zachary to be at home with his brothers.  They come to the sensory gym so that all three boys have a place that’s safe for them to play together.

“It’s so hard for him,” the dad said. “I guess he’ll grow up faster and learn more about life than other kids.”

We watched as the boys ran off together again laughing.

I had assumed that Zachary was on the spectrum.  His dad had assumed the opposite about Howie. 

I wanted to connect with this family of three boys.  I wanted help spread awareness of a different kind.  But I didn’t. I don’t know why.

**********

Someday, I will buy a “squeeze machine”.  So I can see this happy face all. the. time.

**********

I am very grateful to our local Autism Alliance center that opens its hearts and pockets to provide these sensory gyms during the winter months.   This is how we’ve spent our last two Sundays.  The equipment is familiar to my son from school.  But most importantly, he is free to choose what he wants to do and what he needs to do in that moment.  And both weekends, he has made new friends.

Can I say that again?  My five-year-old kid with deficits in social skills and pragmatic language made new friends.  You don’t have to have your degree in special education to understand why.

He’s comfortable.  He’s happy.  He’s safe.  He’s around people who are letting him be.

He’s free to be himself.

If only we adults could learn from that.

“Every boy in this land grows to be his own man
In this land, every girl grows to be her own woman
Take my hand, come with me where the children are free
Come with me, take my hand, and we’ll run

To a land where the river runs free
To a land through the green country
To a land to a shining sea
To a land where the horses run free
To a land where the children are free
And you and me are free to be
And you and me are free to be
And you and me are free to be you and me” – Free To Be You And Me soundtrack

It had been one of those days.

I was toast. I sat on our stairs, gathering the strength to climb them to get the kids ready for bed.

“Mom! When I say ‘warmed up yogurt’ you come running to the trash can!”

Huh? This didn’t sound good. At all.

“WARMED UP YOGURT!”

I climbed down off the stairs into the kitchen.

Waiting for me, on the trash can, was this:

20120208-192843.jpg

“What is that?” I asked.

“It’s a heart. Because I love you.”

My own heart swelled a little. I gave him a hug. He hugged back. A real one. A hug out of love.

“Go back to the stairs,” he said. “When I say ‘warmed up yogurt’ come back to trash can.”

I obliged. Who could say no at this point?

“WARMED UP YOGURT!!!”

I returned to the trash can to find this:
20120208-195526.jpg

“More hearts because I really love you!”

This repeated one more time. And one more picture:

20120208-194550.jpg

“Heart BALLOONS!”

Flying high just like the real thing.

I don’t know how he knew I needed this. Usually, when my stress level soars, so does his. We end up in a feedback loop of overload.

But tonight? A picture on a trash can is worth a thousand words.

When I was a little boy, (when I was just a boy)
And the devil would call my name (when I was just a boy)
I’d say “now who do,
Who do you think you’re fooling? ” (when I was just a boy)
I’m a consecrated boy (when I was just a boy)
I’m a singer in a Sunday choir
Oh , my mama loves, she loves me
She get down on her knees and hug me
Like she loves me like a rock
She rocks me like the rock of ages
And loves me
She love me, love me, love me, love me” – Loves Me Like A Rock by Paul Simon

We had just had a fight.  He went stomping up the stairs, green homework folder in hand.

We fight about homework almost every night.  Not the actual work, but the “dropping what you’re doing because it’s time to start it” fight.

Tonight, I yelled a little louder about it than usual.  The noise in the house had reached a deafening level, and I was on sensory overload.

“Are you kidding me?” I yelled.  “Get upstairs, clear a space off that mess of a table you have in your room, and DO. YOUR. HOMEWORK!”

Gerry disappeared up the stairs for a while.  I went back to making pasta.

**********

About 20 minutes later, I called him down for dinner.

He came down, homework folder in hand, with a slight smile on his face.

“I finished all my math homework,” he said. “And I did all my spelling work for the week.”

He turned to put his folder in his backpack.

“I’m really proud of you, kiddo.” I said.

Gerry turned around.

I pulled him in for a hug.  Tight.

Tim says I don’t hug him enough.  I’m not a hugger, neither is Gerry really.  And I’m so hugged-out from the other two – demanding hugs that aren’t really hugs out of love.

I don’t hug him enough.

I expected him to pull away, like a nine-year-old boy would.

He hugged me tighter.

At that moment, I felt that all was forgiven.  Not just my yelling over something so unimportant as homework, but every other time that I was too tired to be present for him.

I handed him his bowl of pasta.  The noise of his brothers filled the room again.

My kid just needed a hug.  And I guess…so did I.

(editor’s note: In between yelling at Gerry and making pasta, I read about the passing of Susan Niebur.  Many of us knew her online as @whymommy or through her amazing blog Toddler Planet.  My friend Stimey wrote this beautiful tribute to her at My Friend Susan.  Take a moment to read it and read why Stimey chose “thoughtful” to describe her incredible friend.  Thank you Susan for inspiring my hug tonight with my son.  One of the many not-so-little things you’ve inspired so many to do.  My thoughts are with Susan’s family and all of her friends who loved her so.)

storyland hug

Hugging his little brother. Like a big brother should.

“I’ve got the presidential seal (was the president)
I’m up on the presidential podium
My mama loves me
She loves me
She get down on her knees and hug me
Like she loves me like a rock
She rocks me like the rock of ages
And loves me.” – Loves Me Like A Rock by Paul Simon

 

 

Just before Christmas, I was sitting on the bench at my son’s gymnastics class, chatting with my friends.

A mom and dad walked in.  They were holding the hand of their young daughter.  She was tiny and full of energy, her blond hair flying around as she bounced up and down in front of her parents.

I smiled at the little girl and listened while the instructor told the parents about the class.

“Each kid is matched up with a helper to move with them through the class.  We do stretches and then go through the circuit and we end the day in the big foam pit.  Let’s have her join the class and see how it goes.”

The little girl took the instructor’s hand and they walked together to find a spot in the circle.  The mom and dad huddled together, watching their daughter nervously.

I leaned over.  “Just checking out the class today?”, I asked.

They nodded yes.

Instantly I was transported back to January 2010.  That first day when I walked in nervously with my son.  This special needs gymnastics class was the first place we went after Howie’s diagnosis.  I was on edge, only three weeks post-diagnosis.  That class was the first thing I ever publicly wrote about Howie’s autism.  It was picked up the next week by Autism Speaks’ In Your Own Words Blog:

“Is your son on the spectrum?”

The question was slightly jarring to me. My son and I had just walked into a gymnastics class for kids with autism. We had received his diagnosis only three weeks before, and we hadn’t shared our news with anyone except for close friends and family. It was the first time we had been anywhere that was just for kids like mine and I wasn’t really ready to talk to a total stranger about it.

“Yes,” I answered, trying to keep the conversation short.

“Hi, and welcome! That’s my son over there, and my name is Sandy. How old is your son? Do you live in town? How long have you known your son was on the spectrum? What was his diagnosis?”

I really didn’t want to answer her. I wasn’t even sure we belonged at this class, and all I wanted to do was pay attention to my son to see how he was responding to the class. I watched the other kids as they came in – six boys and one girl – and my first instinct was that we were in the wrong place. One little boy was crying, another was spinning in circles, and another one was running in all different directions. My son‘s not like that, I thought to myself. This isn’t us.

And then I looked at my Howie. I watched him hold tightly to his one-on-one helper’s hand as they walked on a low balance beam, but he wouldn’t look her in the eye when she talked to him. I watched him try to run away to jump into the comfort of the sensory foam blocks and become so focused on that foam pit that he couldn’t move onto anything else. I listened to him babble while he swayed back and forth on the rings, and saw the terror in his face when the noise level got up too high. The tears welled up in my eyes. We did belong here. This is the right place for him. We had found a safe place for him to exercise and develop his muscles in an environment that understood his special needs. For so long we had avoided the “regular” gym classes, music classes, and playgroups because of his behavior. No one here was giving me the usual disapproving looks we get when we’re out places and Howie starts to act up.

Two years later.  Here I was.  Asking these parents the same questions asked of me.  Watching them wonder if this was the right class for their daughter.  I wanted to welcome them in the way my now very good friend welcomed me that day.

“It’s a great class,” I said.  “We’ve been coming for two years.  It’s been great for my son.”

Sitting on that bench with my friends, I remembered how hard it was to be there that first day.

This other mom was reaching out to make a connection – to find someone else who struggles on a daily basis like she does – something I myself had been desperate to do for weeks and months. I was instantly welcomed into a community of people who “get it.” No one batted an eye when Howie buried himself under the foam blocks at the end of class so he didn’t have to leave. I got comforting looks of understanding from all the parents and teachers when he had a major meltdown leaving the gym, and big thumbs up from everyone when we finally got our shoes on and went out the door. These were moms and dads who shared my daily difficulties of just getting out of the house. Finally we were somewhere that felt like we belonged.

I remember feeling so alone before that moment.  Now I sit on the bench with the women who are now my lifeline.  Part of a community that understands me and my son.

Howie and I went bouncing hand and hand out of the gym when the class was over.  The dad was getting the details on paying for the class when we were leaving.

“Will we see you next week?” I asked.

“Yes, most definitely.” he replied.

“Will we see you next week?” asked the mom.

“Absolutely,” I replied.

**********

This Saturday will be the first Saturday in two years that we will not be on the attendance list for the special needs gymnastics class.  Howie’s recent behavior changes have made it difficult for him to participate appropriately in class.  He’s becoming more aggressive and non-compliant.  We’ve had to leave the class early two weeks in a row, the last time because he hit his one-on-one helper.  He needs a break.  I need to figure out what is causing these changes before he or someone else gets hurt.

Howie probably won’t care, since we’ll make sure to see his friends from class in other settings.  I am sad.  Very sad.

It’s not just because it’s the one hour a week I get to talk with my friends while our kids are occupied, although that it a huge part of it.

This was our place.  The very first place we felt accepted.  Our very first community.

That little girl and her parents walked into gymnastics to find a place for them.

We’re walking out of gymnastics having found that place.

We may be leaving the gym, but we’re a part of this community forever.

And it’s so hard to do
And so easy to say
But sometimes
Sometimes you just have to walk away
Walk away
And head for the door” – Walk Away by Ben Harper

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