May 2014


 

"The things that make me different are the things that make me ME!" - Piglet quote on the wall of our sensory gym

“The things that make me different are the things that make me ME!” – Piglet quote on the wall of our sensory gym

Last week I got an email from one of Howie’s teachers.  She explained that they had been working on a math assessment test about money and coins.  The directions were to count the money and show your work.  The teacher said that Howie had refused to show his work. His explanation was that he didn’t have to “because I have autism.”

She wrote that they had worked through the refusal by reminding him that this was for his third grade teachers and while she knew he could do it in his head, he needed to show his new teachers that he understood the work.

Now Howie has never been a big fan of reviewing concepts.  “I already know how to do this!” is a frequent refrain when doing assessments or review work.  But this was a new wrinkle.  He had never refused to do work because of autism before.

I wrote back and said I was kind of stunned by all of this since we’ve never said anything like that to him or around him before.  We’ve always talked about autism – and specifically his autism – in a positive light.  Talking about the gifts it brings him.  Lately we had been discussing how there are times when different brains have a harder time with some activities, and that’s why sometimes he needed to leave the room to take a test, or use his headphones or have a sensory break.  But we’ve never said he couldn’t do…anything.

I expressed my surprise at his statement and said I would talk with him about it.

Later that afternoon, Howie and I were sitting across from each other on the floor of our living room.  His iPad was on his lap and he was creating his newest world on his Blocksworld app.

“Hey bud'” I said. ” I heard that you had some trouble working on your math assessment today?”

“Yeah.  But the fruit snacks helped me get through it.”

“What was hard?”

“I had to write it all out but I knew the answer.”

“Your teacher said you told her that you couldn’t do the test because you had autism?”

” I said I didn’t have to do the work because I had autism,” he said. He didn’t look up at all.

“Well, autism isn’t an excuse you know,” I said. ” You can do hard things. But you still need to do the work.”

“I didn’t say I couldn’t,” he said.  “I said I didn’t have to.  I didn’t have to show my work. I could see it and do it in my head.”

I sat there and just looked at him.  His eyes never left the iPad, fingers moving and swiping and tapping as he built a cityscape for his Blocksworld cars to drive through.

Not an excuse.

A reason.

Not a negative.  A positive.

Not can’t do. Don’t have to to understand.

Part of his gift.  He could see it in his head. So why do the extra work?

He wasn’t trying to get out of doing the test itself.  Just the showing his work.  And not because he didn’t want to.

Because I didn’t have to.

He was actually advocating for himself.

“I understand now,” I said.  “But you know there will be times when you have to show your work, even when you can do it in your head.  It’s important for other people to see what you see.”

“I know,” he said. ” And the fruit snacks were really good.”

***********

In our world, autism isn’t and won’t be an excuse.  We’re never going to teach him he can’t do something because of how his brain is wired.

But it can be a reason why things are hard. Or, in this case, easy.

Maybe it’s semantics.

This is why we felt it was important that Howie knows and understands his diagnosis. So he could say, “I see this differently because my brain is wired differently.”

A few weeks ago, M. Kelter of Invisible Strings posted this on his Facebook page:

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Without the words to say “because of my autism”, how might this interaction have gone? Alternative scenarios might have involved a long, drawn out stand off, viewed as noncompliance, leaving everyone exhausted, frustrated and miserable.

Leaving my kid feeling like a bad kid.  A failure.  Different without explanation as to how or why. Removed for long periods of time from his general education classroom as things escalated, keeping him away from his peers.

He knows he leaves to take tests in a quiet space so he doesn’t get distracted.  We are working on helping him understand that his aide is there as a “coach” and “interpreter” when he needs help.

But he also needs to know that we will listen to what he is really saying and doing and go beyond the specific words that he is using  in order to make sure that we understand their meaning.  Because here he was, in his way, appropriately advocating for himself.

It’s our job to make sure we hear him when he does.

"The things that make me different are the things that make me ME!"

“The things that make me different are the things that make me ME!”

 

Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you’ve designed
Oh yes, sweet darling
So glad you are a child of mine.

Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine.” – Child of Mine by Carole King

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On Thursday, I may have accidentally peeked at my Mother’s Day present from Howie.

Not on purpose.  I was going through his backpack for his homework and found this:

the cover

the cover

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(he calls me Momabom)

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and cue the tears…

After I wiped the tears away, I sent his teacher an email:

Hi!

I just took a peek at the People magazine Mother’s Day project and I’m in tears. I’m curious – How much help did he need with that?

That’s a special gift. Thank you.

I don’t know why I needed to know how much help he needed.  Maybe because I knew how hard these past few weeks have been.  How putting pen to paper has been so challenging. I knew these were his words and our stories. But I just…I just had to ask.

She wrote back:

It was a process and very much a team effort, but I have to tell you…never have I seen him quite as motivated to write as when I mentioned it was for Mom-to thank her for all of the special things she does.  🙂  You can definitely see the bond the two of you have.  Glad you enjoyed it, but you shouldn’t have PEEKED! 😉

And I started to cry again.

Happy tears.

I’ll admit that in the past I might have been a little discouraged that he needed help with this.  In the beginning, complete independence was the goal in my head.  No supports.  All on his own.

But on this special needs journey that I’ve been on, I’ve realized that this – this People Magazine Mother of the Year story – this is the Holy Grail.

Everything we – and he – has worked so hard on is wrapped up in this amazing Mother’s Day gift.

Teachers who will wait and work with him in his way with what he needs.  Knowing that he can do the work but he needs the supports to succeed.

Presuming competence all the way.

His smile when he gave it to me this morning said it all.

“I love you, Momabom”, he told me this morning.

“I love you too, little man.”

I love all three of these incredible little men. Happy Mother’s Day to me.

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If you love somebody
Better tell them while they’re here ’cause
They just may run away from you

You’ll never know quite when, well
Then again it just depends on
How long of time is left for you

I’ve had the highest mountains
I’ve had the deepest rivers
You can have it all but life keeps moving

I take it in but don’t look down

‘Cause I’m on top of the world, ‘ay
I’m on top of the world, ‘ay
Waiting on this for a while now
Paying my dues to the dirt
I’ve been waiting to smile, ‘ay
Been holding it in for a while, ‘ay
Take you with me if I can
Been dreaming of this since a child
I’m on top of the world.” – On Top Of The World by Imagine Dragons

This morning I was cleaning out my dresser drawers.  We were donating it to the thrift shop up the street and everything needed to be out of it.

I pulled out all the clothes from the bottom drawers and moved my way to the small top jewelry drawer.  I’m embarrassed to say how thick the layer of dust was on top.

Hoarders would have a field day with the content of that drawer.

But there among the old papers, Mother’s Day cards, hair clips and broken watches and Lego pieces…

There was this:

21st Birthday

21st Birthday

 

When I turned twenty-one, my parents gave me 21 presents.  Some were small and silly, some were amazing.  This was one of them.  Inside was a letter from my dad to me.  One that I forgot existed.

I opened up the letter, reading it for the first time in I have no idea how many years.

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January 18, 1993

Dear Alysia,

Perhaps it is impossible for any person who is not a parent to understand what it means to have a child.  Your birth twenty-one years ago was the greatest moment of my life.  Holding you in my arms, looking into your eyes, changed the entire world for me.  It changed my past and my future because it gave my life new meaning.  I was amazing that the emotional import of becoming a parent for the first time was so overwhelming.  If you are lucky enough to have a child someday you will be surprised at how different the intensity and the quality of the rush of love is that accompanies your first child’s birth.

No matter what you do in life you have already given me more pleasure than I could have ever hoped for.  You know that I will always stick with you through good time and bad forever.

Even though it’s probably impossible for a daughter and a father to ever forget their “roles” in each others lives I hope we can continue to become regular friends who can learn from each other, disagree with each other, and still know like all true friends that we can depend on each other.  Unfortunately I never had the chance to be an adult friend to my father.  If I had I’m sure the relationship would have had its stormy moments as I was an independent minded young man who perceived most advice as nagging. But in the end it would have worked out because your grandfather’s values were just like mine.  Loved was the underpinning of our relationship.  I wish he could have met you and known you because he would have seen that his life and love had been passed to a great young woman.

I admire you for all you have done in your 21 years.  I look forward to you seeking a happy and fulfilling life.  Don’t let life’s hard knocks get you down.  All children carry some of their parents inside their heads and hearts forever both the good and bad. I hope you will always cherish the special moments you and I have had and will have for many years to come.  I certainly have cherished them all.

Welcome to the adult world – happy birthday.

I’ll love you always,

Dad

Sometimes being a hoarder has its perks.

Now if you’ll excuse me, I think I have some letters to write to my own children.  For them to hide away somewhere and pull them out when they need it most.

Oh and I love you always too Dad.  And I miss you every day. Thank you for being inside my head and my heart.

Love, Alysia

It well may be
That we will never meet again
In this lifetime.
So, let me say before we part:
So much of me
Is made of what I learned from you.
You’ll be with me
Like a handprint on my heart.
And now whatever way our stories end
I know you’ll have rewritten mine
By being my friend.

Like a ship blown from its mooring
By a wind off the sea.
Like a seed dropped by a sky bird
In a distant wood.
Who can say if I’ve been changed for the better
But because I knew you…
Because I knew you…
I have been changed for good.” – For Good from the play Wicked