ed note: I’m departing from my usual song title today to share a poem written by my oldest.  He didn’t write it for Autism Acceptance Day.  But it’s a perfect poem for it. And I’m incredibly proud of him  – not just for writing it, but for believing it and believing in his brothers and the members of their autistic village.

 

The Tiger Cub by Gerry* Butler (age 12)

Long ago, a baby tiger was born,
And he could not speak
As smart as he was,
His future seemed bleak
He was as smart as can be,
And witty and kind
But all the other animals
Would not share their time
“You’re not as good as us!” they said,
“You never will be!”
But in his head the tiger thought,
“I believe in me”
One day at school,
When he finally learned to read and to write,
He wrote down his thoughts and his teacher exclaimed,
“My Goodness, this tiger is bright!”
And all through the kingdom,
And all through the land,
He was known as,
The Tiger Who Can

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My Tiger Cubs

*his alias

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It’s May, 2014.

We are sitting in Lewis’ kindergarten transition IEP meeting.  As a team we are reviewing every service and service delivery to make sure it fits right for Lewis as he leaves preschool.  It’s not my first rodeo and I have plenty of anxiety over the whole transition process based on past experience.  Lewis’ incredible preschool teacher and team know this – and know Lewis – and we discuss every detail to make sure we are all on board and understand how kindergarten will look for him for the new school year.

We discuss his social skills programming, his need for visual and written cues when transitioning, his extended school year plan, and all the supports he will need for success.

“So now let’s talk transportation,” says his teacher.

I sit up straight in my chair, stiffening a little.

I know this is something that we’ve talked about in the past.  But we don’t really feel like he needs specialized transportation.  I really think he will be okay on the big bus.”  His teacher stops talking for a moment.  “Um, you don’t agree?”

Tim elbows me.

“You’re pulling on your sleeves,” he says. 

That’s my “tell”.  My sign that I’m having an anxiety attack.

It’s not that I don’t think he can’t be on the big bus.  It’s just that…” I take a breath.

It’s just that I don’t know how I’m going to manage all three kids getting to school at different times with different modes of transportation.”

************

This morning I sent a message to my friend Jess.

“I’ve officially lost my ability to write,” I texted.  “I’m trying to write about how Lewis taking the bus and me driving Howie is an example of not just our acceptance of what each kid needs but an understanding of those needs….None of the kids asked why one was going to school one way and one another…we’ve taught them that everyone is different with no stigmas attached.  But the words aren’t coming without sounding stupid…”

And she gave me brilliant advice like she always does: “Start in the middle.  Where the feelings are.  Don’t try to start at the beginning.”

Where the feelings are.

So here goes.

A long time ago, that meeting would have made me sad.

The big bus would have seemed like “The Holy Grail” of transportation.  Going to school the way most kids do.  Getting that big “first day of school” bus picture.  I would have looked at it as one of my kids can ride the bus and one of them…can’t. My anxiety in that meeting would have  focused on their disabilities in the negative, the kind of deficit model of looking at challenges and accommodations as a something bad and temporary with the hopes that maybe someday things will get better. I would have focused on the fact that I had one kid whose challenges kept him off the big bus, while both his big brother and little brother were able to ride it.

But here’s the thing.  I’m not that me anymore.

Last school year, we took Howie off of the mini bus. He had been riding the mini-bus since kindergarten to and from school and it’s written into his IEP that he needs specialized transportation. But for second grade,  I started driving him to school and he would taking the mini bus home.  He needed a “sensory overload free” way to enter school in order to start his day off right.  He didn’t want to talk to anyone or have anyone talk to him.  About halfway through the year, that need for a sensory overload free trip became evident for the ride home as well.  He would be able to use his calming tools to get through the school day, but have a very difficult time with that on the way home.

Once I began driving him both ways, his stress level leaving the house and coming home lessened greatly, spilling over to a better day at school and at home in the afternoon.

It wasn’t that he couldn’t take the mini bus.  Or even the big bus.

It was that both of those choices weren’t right for him.  For his success – academically and emotionally – he needed me to drive.  This accommodation was no different than any of the other supports listed in his IEP.

Two kids – two brothers – with the same autism diagnosis.  Needing two completely different accommodations.

Perhaps it’s semantics again.

But changing the question from “Can my kids do something”  to asking  “what is appropriate for them” – it made all the difference.

 

**********

May 2014

“So what do you think?  Do you think Lewis can take the bus to kindergarten?”

All eyes of the team are on me.

“I know that with a lot of prep he can.  I think we should give it a try,” I say.

Are you worried that Howie will be upset or jealous that Lewis is on the big bus?”

I smile. “No, actually, I’m more worried that Lewis will wonder why he doesn’t ride with Mom to school.” I say.  “But he will know that’s just how he gets to kindergarten.  And Howie will know that too.

I sigh.

It’s the logistics that make me nervous.  Gerry’s bus to the junior high comes at one time, the elementary school bus at another.  And somewhere in there I need to drive  Howie to the elementary school too.  But we will figure it out.  We always do.”

I shift in my seat, pulling at my sleeves.

Can we talk again about the fact that my last kid is leaving this amazing preschool for kindergarten?  I’m not so sure how I feel about that…”

**********9c28158d427833b7df2425147b2e6445

We talk a lot in our house about fair not meaning equal.  My kids have seen the cartoon of three characters of all different heights looking over a fence.  They each have different sized boxes to stand on so they can see over the fence line.  They aren’t equal sized boxes.  Each character needed something different to get them to the same place.

We’ve never said “I hope someday you can take the big bus to school.”

In our town, some kids walk.  Some arrive in cars.  Some take the big bus.  Some take the mini bus.

There’s no better or worse way to get to school.  For my boys, there’s no stigma attached to any mode of transportation.

My three kids need something different to get them to school.

For one, it’s mom’s car.

For the other two, it’s the wheels on the bus.

All through the town.

On the bus yesterday for kindergarten orientation.  He did just fine.

On the bus yesterday for kindergarten orientation. He did just fine.

 

 

 

Dentist appointment today for Howie.

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

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

There were a million ways for this to go bad.

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

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

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

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

Howie sat up and looked at Lewis.

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

And so…

IMG_20121212_104043

He did.

IMG_20121212_104221

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

Ten.

How are you ten years old?

I feel like I need to write something poignant.  Something meaningful.

Something about how you changed everything for me.

Something about how from the very moment they handed you to me, I knew you would teach me more than I could ever teach you.

You taught me that you have more understanding of what it means to be a big brother than most siblings do.

You taught me that being different isn’t wrong.  And showed me through your paper snowflakes.

You taught me it was okay to panic about having your brother in school with you because it was out of love and care and your need to protect him.

You taught me the way out of the meltdown the day when I was stuck in a moment.

You taught me that you need me to advocate just as fiercely for you as I do for your brothers and that you feel the stress in the house just as we do.

You taught me to put the spotlight back on you and showed me how to recognize when you’re in pain.

You taught me how much you are like my dad when you wrote to the President asking him to turn The White House blue.

You taught me that your brother deserved to know that  he was autistic because you knew he deserved to know why he was special.

You taught me that sometimes a brother knows best and wowed me with your “inventions” to help him, and.

And you taught me that ten years later, you are still my best travel companion.  And that sometimes a hug says more than words.

**********

Ten.

How are you ten years old today?

The title of this post is “The Man That You’ve Become”.  It seems an odd title perhaps for a kid just turning ten.

People say you have an old soul.  You have had to grow up fast here.  Your interests are “older” than many kids your age.

But you are still my little guy.  My buddy.  The amazing big brother who will still sit and watch “Blues’ Clues” and run laps around the house and pretend to lose the race.

I have no doubt that you will change the world.

You’ve already changed our little corner of it simply by being you.

Happy Birthday to my favorite ten year old.

Doing what you do best…being a brother

Big wheels, hot wheels
Little trucks and cars
Skinned knees, climbing trees
Wishing on the stars
Moments may be lost somewhere in time
But the sweetest memories are never left behind
Now you’ve grown so fine
And come so far…” – The Man That You’ve Become by Molly Pasutti

There was another hero there that morning with Eustacia Cutler.

He was sitting two seats over from me.  A man, slightly balding, sitting quietly just like the rest of us.

I was so engrossed in Mrs. Cutler’s words that I didn’t even notice him.

Until he stood up to speak during the Q&A session.

He raised his hand and was given the microphone.  His voice shook a little.

He introduced himself as a 55 year old man with a brother with autism.

His brother is non-verbal.  He wants help and advice from Mrs. Cutler on how to reach him.  Or, more directly, can he still be reached?

“Of course,” replies Mrs. Cutler.  She’s trying to feel him out more, get more information on what he means and how he connects now with his brother.

“We were estranged for a long time.  I’ve just started to see him again.   You see, Mrs. Cutler…” His voice trails a little. “My parents did the reverse of what you did.  My parents put all their focus on me and my other siblings.  Not my brother.  It was no fault of theirs.  It was they knew to do at the time.”

I let out all the air I had been holding in.  My friend Jess touches my shoulder.  She knows.  This is too much.

The sibling thing.  The balance.  The feeling like you’re sacrificing one child’s needs for another.  Not knowing what is right or wrong but just hoping you’re doing the right thing.

Mrs. Cutler writes in the preface of “A Thorn In My Pocket” that her other three children asked not to be included in book.  She writes  “While trying to help Temple, I left them in the dark. Temple and Daddy were the stars – the siblings and I, minor constellations circling uneasily around them.”

She said that autism needs to be viewed as a family issue.  That all the family members need counseling on the disorder.  Too often, she said, the siblings become helpers.  “Children should be children,” she said.

And here was this man – this 55 year old man – still coping with trying to figure it all out.  After fifty-five years, autism was still an family issue.

**********

I knew I had to talk with him.

After getting my book signed, I went up to the man.

“Hi,” I said, “I just wanted you to know how much it meant to me to hear your question about how to connect with your brother.  I think it’s pretty incredible that you’ve found your way back to him.  I have three boys, and my middle one is on the spectrum.”

(yes, I said just my middle one.  Somehow, my subconscious forgets that I have two kids on the spectrum. I don’t even want to think about what that implies.  It’s clear where my energy goes.  I’m ashamed to even admit that. Can we just move along…)

“Oh, thank you,” he said. “Yeah, it’s been great. You know, my parents.  They did the best they could.  They didn’t know…they didn’t know.”

He continued. “He’s up in Montreal and I go to visit him when I can. I bring my kids to see him.”

“I think that’s wonderful.  It’s great that they get to be with their uncle.” I was smiling.  My eyes were teary.

“Yeah, it is.  I don’t know if it really means anything to him, though. He seems happy to see me.  He likes to go out to eat, so we always do that when I see him.  He has his coat on already when I get there.”

I gulped.  Swallowing the tears.

“Well, there you go,” I said. “You are connecting with him.  It does mean something to him.  You found your thing.  I think that’s everything.  My oldest…he struggles to find that connection with his brother.  I’m so glad that you’ve found yours.”

“Well, yes.  I guess I have,” he said. “Thank you for sharing that with me.”

I shook his hand and said good-bye.  I turned back to Jess and tried to breathe.

**********

That night, Gerry came over to the dinner table and slumped into his chair.

“When will Howie open the Lego sets he got for his birthday?”

I looked over and there were two Lego building sets on the floor.  Howie had opened all his birthday presents and was playing with them one by one.  This is the classic difference between my two boys.  Howie opens one at a time, and perseverates on that one toy.  Then…moves on.  Gerry needs to open them all and put everything together immediately.  He couldn’t stand the fact that the Lego set had been sitting there all day.

“He will get to it.  Be patient.”

“But I told him I would help him with it.  I want to do this with him.  Why won’t he open it?”

“He will.  It’s his set.  In the meantime, why don’t you play with what he’s playing with?”

“I’m sick of Hot Wheels,” Gerry muttered. “I just wanted to find that one thing that we both liked doing together.”

He slunk off, back up to the safe haven of his room.

********

The man that I met that morning had his connection.  After all these years, he found his way back to his brother. They were bonding over their love of restaurants, connecting without even knowing it was happening.

He’s a hero.  A man who went against everything he knew and forged a path back to the brother he loved.  Unconditionally.

Sigh.

I know someday my boys will be heroes too.

But right now?

I don’t need them to be anything more that just brothers.

**********

Temple Grandin and Eustacia Cutler have set up a fund to help families address the needs of autism.  Find out more by clicking HERE

And to read the most incredibly moving and powerful essay on “innocence lost – the siblings”, click HERE

And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive

So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you” – Hero by Mariah Carey

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

a conversation.  from tonight.

Gerry came out of the shower and was scrounging around for his pajamas.

“Mom.  I have an idea for that book we were talking about.”

He was alluding to a discussion that he and I had had a few months ago.  We were talking about his relationship with Howie, and I said maybe we could write a book together about it.

“Shhhh.” I said. “Tell me quietly.  I don’t want your brother to hear.”

Gerry stopped what he was doing and looked right at me.

“When are you going to tell him he’s…different?”

I stood there.  Waiting for what was coming next.

“Don’t you think he should know about his autism?  So he understands?  I know most of his friends are from his school and are like him, so that’s really good.  But at some point, shouldn’t he know?  Because really?  Sometimes it’s very stressful for me that I know but he doesn’t.”  His eyes teared up a little.

I knew I had to choose my words very carefully here.  This…was important.

“Yes, of course he needs to know.  Dad and I just have to figure out the right time.  He’s only five.”

“Do you have friends who have kids with special needs?  Kids who are older?  Can’t you ask them when they told their kids?”

And then my kid wows me.  Again.

“You know, it’s not fair.  All his timeouts.  At first I thought they were good.  Teaching him.  But if he can’t help it, then the timeouts aren’t fair, are they? It’s like if you’re driving and your car’s wheels lock up.  And you hit something and cause a lot of damage.  It’s not your fault that the car didn’t work the way it should.  Right?”

I’m in awe of this kid.  Of how much he loves his brother.  Of how much he gets it.

“Mom.  Shouldn’t he know so he understands?”

“Yes.  He should.  I will ask my friends how and when they told their kids.  And what they said.  You’re a pretty smart cookie.  Now let’s talk about that book.”

So, I’m asking you.  My friends.  When did you tell your kids that they were…different?

I’m accustomed to a smooth ride
Or maybe I’m a dog who’s lost it’s bite
I don’t expect to be treated like a fool no more
I don’t expect to sleep through the night
Some people say a lie’s a lie’s a lie
But I say why
Why deny the obvious child?
Why deny the obvious child? ” – The Obvious Child by Paul Simon