"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

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

 

A few years before I got married I worked in college admissions for a small women’s college in Vermont. The students that applied mostly came from the Northeast and for many of them they were first generation college students.

I remember a conversation I had with my friend, the assistant director of admissions. We were talking about a potential student who we knew would be a great fit for the school but hadn’t sent in her deposit yet. The assistant director had multiple conversations with the young woman. Finally, the applicant said “I want to come to your school. I just can’t put pen to paper to send in what I need to.”

It’s a sentence that stuck with me for some reason. Maybe it was the clever use of words to describe the difficulty in getting an idea out of her head and putting it out there for others to see. Maybe I just admired her honesty. Whatever it was it’s a phrase I’ve used often now as a parent when describing Howie’s difficulties in school.

**********

It was vacation week this week and Howie needed to catch up on some work from school. He had begun to check out about a week before vacation started and work wasn’t getting finished. Yesterday morning he came to work with me and with a lot of reinforcers, we got down to work. He was working really hard on a math sheet consisting of addition and subtraction of three digit numbers. He was concentrating really hard on watching the signs and borrowing or carrying when necessary. After every question he asked for a mom squish.

With about six questions to go, he put his pencil down.

“My brain is buzzing!”

I looked at him. His body was slumped in his chair. He was spent.

“Your brain is buzzing?” I asked. “What does that mean?”

“It means my brain is buzzing. Can I be done?”

I decided to push a little bit. “We can be done with this one. But let’s do a few more smaller problems and then we will be completely done.”  He had one sheet of single digit subtraction with a few problems left to complete.

“Okay.” He said quietly. He did the ones I asked. “Now can I be done?”

“Yup. Nice job!”

He took out his iPad and began to play his Blocksworld app.

“Hey – does your brain buzz like that a lot?”

“Sometimes,” he answered. He looked up briefly at the original three digit math sheet. “When I do work like that.”

deskwork

working hard

**********

It’s clear his frustration level comes from not being able to get the answer out of his brain. In school he uses phrases like “Mrs C! I have butterflies in my brain” when he’s asked reading comprehension questions and he starts to shut down. He can only complete three out of six rows of a subtraction math test in the allotted time.  When questions are modified or time restrictions are removed, he can get the answers correct. It just takes a teacher willing to sit and connect with him. Or help him get pen to paper.

He knows his stuff. He can read and answer questions about the book when it’s something he’s interested in. He can apply math concepts to real life situations and when given his time and his space he can do word problems and regular math problems. In his way.

**********

In the middle of vacation week on a particularly rainy morning, Howie was doing laps inside the house. He grabbed a kitchen timer and timed himself doing one lap in the house.

“I did that in 16 seconds!” He exclaimed. “Now let me do some homework. If I did two laps in the house, at the same speed, my time should be…32 seconds! Let’s try it!”

And for the next 10 minutes, he timed himself doing laps and predicting what his times would be.

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picture of Howie running…just not at home

**********

It makes me think a lot about the pen to paper issue going forward for Howie in school. The work is just going to get harder. The gap between what he knows and what he can get out of his head will grow when taught in a traditional school setting. He could start to fall behind academically – not for lack of ability but for an inability to do it in the manner required. His intelligence is his strength and it pulls him through the difficulties he has sitting, attending and well, putting pen to paper.

So what will happen to him emotionally when his grades may not reflect his true knowledge? How do we keep him from giving up trying to put pen to paper at all?  And how to we make sure he continues to have teachers who stop and listen to his “butterflies and buzzing” to help him through?

**********

I wish I could remember what happened with that applicant all those years ago. I can’t remember if she ended up matriculating or if she went somewhere else or didn’t go to college at all. I hope that wherever she ended up, she was happy with the decisions she made.

I’m forever grateful to her for teaching me a phrase that would help me understand Howie better than any other. And as we work through the butterflies and the buzzing in his head, I’ll make sure he knows that others have trouble putting pen to paper too.

“If you could read my mind, love
What a tale my thoughts could tell
Just like an old-time movie
‘Bout a ghost from a wishin’ well
In a castle dark or a fortress strong
With chains upon my feet
You know that ghost is me
And I will never be set free
As long as I’m a ghost that you can’t see ” – If You Could Read My Mind by Gordon Lightfoot

Dear Mom,

I was trying to think of something special to do or say  for your birthday today.

Sometimes – ok a lot of times – spoken words just escape me.

I know our phone conversations are short.

Sometimes it’s because of the kids – too much fighting/wrestling/smashing and crashing – and my attention goes to them and not you.

But most of the time it’s me.

I have words, just on the surface, but I won’t let them come out.

Too much emotion I guess.

Too many things unspoken after all these years.

Too much going on in my head about my life, the boys, everything.

I’m afraid that once I start, the flood gates will open and I won’t be able to stop.

But if there’s anything I’ve realized, though, after all we’ve been through…

If you don’t say it now, you may never get a chance to say it at all.

So I’m doing it in the way I know best.  In a letter here to you:

Thank You.

Thank You for being the glue that held our family together.  Even before Dad was sick.

Thank You for everything you gave up those 13 months.

Thank You for being the strong one.  When the rest of us were falling apart, you were there for us.

Thank You for speaking up at the Town Democratic Caucus during the conversation about who would step into Dad’s seat at the State House.  You spoke for me when I couldn’t speak for myself.

Thank You for standing by my every decision I made those two years following when I was at the State House.  You never once told me what to do. But always stood by what I chose.  Even when I knew it was time to leave.

Thank You for standing by every decision I’ve made period.

Thank You for hosting our wedding at your house. I knew it then but even more now how hard it was – emotionally, physically and financially.  You never said no.  You made our day magical and special.  Rainbows and all.

Thank You for being at our house when Gerry was born.  And for sitting with me in the hospital when Tim needed a break.

Thank You for being here with Gerry when Howie was born.  Knowing you were with him made those difficult days a little easier.

Thank You for staying at our house longer than planned after Howie was born.  And for convincing me through my tears that I could parent two kids.

Thank You for your immediate and complete understanding and acceptance of the boys and their diagnoses and special needs.

Thank You for the trips to Story Land, the Aquarium, and everywhere else.

Thank You for the hours on the floor playing with Hot Wheels and Little People and Legos.

Thank You for getting Gerry out of here for ice cream when he couldn’t be in the house one more second.

Thank You for showing me that hope and love springs eternal, and that new chapters can be written with new loves.

Thank You for understanding these days when I can’t talk.

Thank You for always having room for us.

Happy Birthday Mom.

Thank You for being my mother.

I love you.

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Well, I know it’s kinda late.
I hope I didn’t wake you.
But what I gotta say can’t wait,
I know you’d understand.

Every time I tried to tell you,
The words just came out wrong,
So I’ll have to say I love you in a song.” – I’ll Have To Say I Love You In A Song by Jim Croce

 

 

 

“It’s grief… it hits you. It’s like a wave. You just get this profound feeling of instability. You feel like a three legged table. Just suddenly… the Earth isn’t stable anymore. And then it passes and becomes more infrequent, but I still get it sometimes.” — Liam Neeson on his wife Natasha Richardson’s sudden death from traumatic brain injury five years ago from (his 60 Minutes interview)

It’s a funny thing.  Grief.

Funny is the wrong word.  Sneaky.

When I was thinking of a song title for my last post, I googled “father and son songs”.  And of course, Father and Son by Cat Stevens came up right away.

Cat Stevens was one of my father’s favorite artists.  I have memories of driving to school in his Volvo, listening to Cat Stevens’ Greatest Hits on the tape deck.

I clicked on the YouTube Video that accompanied the google link:

And I started to sob.

It wasn’t just the song that reduced me to tears in front of the keyboard.

Cat Stevens looks like my dad did when I was a kid.  He wrote words that would have come out of my dad’s head.

It was an immediate transport back in time.  Back to memories that are still fresh and raw.

I don’t really know how to explain these waves of grief, even 15 years later.  I think about him all the time in different ways.  Sometimes it’s just a news story on TV and I want to talk with him about it.  Sometimes it’s a memory that I can’t quite see in my head and I want to ask him what happened.

Sometimes it’s hearing about a friend battling cancer and me wishing I could do a million things differently all over again.

Those times come in and out.  It’s a brief twinge and then it’s gone.

And then there are moments when the grief feels all consuming. I get stuck.  Mired in a hole of what ifs and what should and shouldn’t have been.

Today could have been one of those days.

But I stopped and looked again at the photo that started it all.

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And I remembered that these are the times that need my focus now.

I can choose to let the grief send me down the rabbit hole.

Or I can choose to let the grief push me to see how important and precious these moments are.

Because a boy and his dad, reading a book about boats and engines?

That’s a really big deal.

It’s not time to make a change,
Just sit down, take it slowly.
You’re still young, that’s your fault,
There’s so much you have to go through.
Find a girl, settle down,
if you want you can marry.
Look at me, I am old, but I’m happy.

All the times that I cried, keeping all the things I knew inside,
It’s hard, but it’s harder to ignore it.
If they were right, I’d agree, but it’s them you know not me.
Now there’s a way and I know that I have to go away.
I know I have to go.” – Father And Son by Cat Stevens

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Just a boy and his dad, reading a book about boats and engines.

No big deal.

I took this picture last night right after dinner.  I hid around the corner so I didn’t disturb them (hence the really grainy photo and the everything out on the table and the lampshade in the way).

Monday was library day and Howie renewed his book about boats.

Tim picked it up last night and called Howie over to the table. “Show me the part in the book you like.”

Howie turned to the page with a cut away of a rowboat.  “I didn’t know you could sleep in a rowboat!” he exclaimed.

And what followed was THIRTY minutes of discussion at the table.  Of boats and cutaway drawings.  Of engines and pistons.  Of cars and trucks and things that go.

Questions were asked.  On both sides.

I took this picture and heading upstairs hearing “Could a really BIG crew fit on that boat?”

Now you know the autism parent in me wants to tell you all things autism that I see.

The joint attention.

The pragmatic language.

The shared interests.

The sitting and listening for 30 minutes (just hours after I filled out the Vineland saying he couldn’t do this).

The actual reading of a library book.

But not today.

Today I see a dad who found a common bond with his son.

I see a son who is soaking up every word from his dad.

And I see smiles from them both.

Just a boy and his dad, reading a book about boats and engines.

No big deal.

It’s not time to make a change,
Just relax, take it easy.
You’re still young, that’s your fault,
There’s so much you have to know.
Find a girl, settle down,
If you want you can marry.
Look at me, I am old, but I’m happy.

I was once like you are now, and I know that it’s not easy,
To be calm when you’ve found something going on.
But take your time, think a lot,
Why, think of everything you’ve got.
For you will still be here tomorrow, but your dreams may not. ” – Father and Son by Cat Stevens

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