My Three Sons


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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Connection

“Friendship is born at that moment when one man says to another: “What! You too? I thought that no one but myself . . .”” – C.S. Lewis

**********

Note in Howie’s log book last week from one of his 1:1 aides: “After social group Howie insisted on flapping his arms.  The group was not at all overly stimulating or excitable.  When I talked to (him) about this he said ‘sometimes autistic people have to do that thing.’ I said ‘stimming’? And he said ‘yes I need to stim and flap my arms’…he said sometimes he needs to flap if he’s excited.”

**********

Howie had his eighth birthday party two weeks ago.  We invited his whole class because, well, because.  I could give you some reason like making sure to include everyone but truthfully there wasn’t anyone he thought he couldn’t invite. He’s been with most of the kids for two years and he really wanted them all at his party. We did one of those indoor trampoline places parties because where else can you go with 28 2nd graders and contain them all?

I was nervous of course.  I don’t get to see how kids interact with Howie except for a few moments here and there.  I get the log book notes and information from teacher meetings, but I never see it with my own eyes.  I watched these kids interact with him – seek him out – not just because it was his birthday but because they care about him.  They told inside jokes on the bench as they waited for their jump turn.  They checked in on him when they were jumping. They jostled for position around him for cake.

When we got home and settled in, Howie opened his presents.  Some cards were on green construction paper (his favorite color).  Some cards had his special “Hero Howie” symbol on them.  All of the cards had special note, poem, story, or picture drawn just for him about him.  Every present was something he wanted that he didn’t already have.  I asked Howie how the kids knew.  “They asked me in school and I told them.” he said matter-of-factly.  Well of course.

That night I sent his teacher some pictures from the party with the note: “All those kids are quite incredible and so so good to Howie. They knew what he liked and how to interact with him.  That is all because of you. Thank you for creating a classroom and a space that allowed my kid to have his real big first friend party. You sure I can’t convince you to teach third grade? :)”

His fabulous teacher wrote back: “They absolutely adore him and are really cheering for him each and every day.  I’m so glad to hear that the party went well!”

**********

Note in Howie’s log book three weeks ago from his other 1:1 aide (paraphrasing): “Howie seemed to be having a hard time with his shirt.  It was making him uncomfortable all day and he couldn’t focus.  We sat and talked about the things that I am bothered by and he was able to work through it.  It really seems to help him when others connect with him about sensory issues.”

**********

From my blog post “Born This Way part two“:

I have spent the days since that moment we got Howie’s autism diagnosis in December 2009 wondering how I would talk to Howie about his autism.  I rehearsed it in my head many times.  Bought books.  Read blog posts.  Wanted to make sure I did it “right”.

We stopped at a light.

“So…” I said.  “That ability is a gift.”

“It is?”

“Yes.  You know what I mean by ‘gift’, right?  Not like a birthday party gift but more like a talent.  Something special you have.”

“I know! What is it? What’s it called?”

“It’s called autism.”

“So I have autism?”

“Yes.”

“Hmmmm.”

I decided to push it a little bit more.

“Hey, you know who else has a gift for seeing stuff like that?”

“Who?” he asked.

“Your friend Brooke.”

“Brooke has autism?”

AND THE BIGGEST SMILE FILLED UP MY REAR VIEW MIRROR.

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For some April is about Autism Awareness.  And that’s fine and good and it’s what works for them.

In our house, though, this month (and every month) is about autism connection.

According to the experts, that’s supposed to be something that my boys can’t do, right? Connect with others.

How wrong could they be?

I see connection every day with my kids – between teacher and student, between classmates and friends, brother to brother, and parent to child.

I see it in the children who come to our sensory gym. When families are given the safe space (physically and emotionally) for their kids to play, relationships and playdates and connections blossom.

For us- for my boys, for me as their parent, this month is about connecting  to find that piece – that tie that binds – to make one feel less alone.  To make one feel part of a community.

And for helping the world understand that community, one conversation at a time.

**********

From my personal Facebook status on March 31st:

When Howie is feeling “out of sorts”, he often asks for a “mom squish”. Probably because I am the squishiest of the bunch.

Tonight, I was complaining that my back hurt as I sat down crooked on the couch. He came over to me, looked me right in the eye, and said “do you need a Howie squish?”

It’s the eve of Autism Awareness Month and every day my kids smash and crash their way through every stereotype and every myth. But in our house it’s not about awareness. I want them to know that they are accepted, understood, and loved for who they are.

And those Howie squishes? They make all the aches and pains go away.”

IMG_3709Happy Autism Connection Month.

 

Why are there so many songs about rainbows
and what’s on the other side?
Rainbows are visions, but only illusions,
and rainbows have nothing to hide.
So we’ve been told and some choose to believe it.
I know they’re wrong, wait and see.
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me.

Who said that every wish would be heard
and answered when wished on the morning star?
Somebody thought of that and someone believed it.
Look what it’s done so far.
What’s so amazing that keeps us star gazing
and what do we think we might see?
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me.

All of us under its spell. We know that it’s probably magic.

Have you been half asleep and have you heard voices?
I’ve heard them calling my name.
Is this the sweet sound that called the young sailors.
The voice might be one and the same.
I’ve heard it too many times to ignore it.
It’s something that I’m supposed to be.
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me. ” – The Rainbow Connection by Kermit the Frog

A great way to be part of the conversation is to purchase one of these #wearthechange shirts created by my friend Jess.  Through the month of April, the net proceeds from these shirts will be split three ways with the Doug Flutie Jr. Foundation for Autism, The Autistic Self Advocacy Network, and my nonprofit SenseAbility Gym.

Here is Gerry modeling his new shirt (he wanted to remain headless).  Click on the caption to go to the Zazzle Store.

Note: As I wrote in part one and in part two, I asked Howie if I could share this story here.  I told him that I had a blog and that I liked to write about things that happen in our lives on it.  His response?  “Sure.  You can share this with the blogosphere.”  Well, okay then.  And this time, I asked all three boys if it was okay to share the story.

Chronologically, part three came after part two but before part one.  But this is how it all came out here.

Over the past few weeks since the “big” conversation that wasn’t so big, Howie and I have been talking a lot about autism.  It’s not hard to bring it up – at the sensory gym we have a community bulletin board with information from our local autism resource center, the Doug Flutie Jr. Foundation for Autism, and Birdhouse for Autism (an app and web based application for tracking therapies, medications, sleep and anything and everything related to a child’s well being). So the word comes up whenever we’re there.

But it had always remained between us.

We’ve also had some discussions about other kids we knew who were autistic.  Friends who had given us permission to share that information.  Each time, it was met with a smile.

Yet for some reason, I never mentioned the fact that his younger brother was autistic too.  Again, this is on me.  In my head I still thought there had to be the right time and place to talk about it.  That Lewis should know first.  Or there had to be some specific chain of events to make it “the right way”.

Apparently, I don’t learn my own lessons.

Two weekends ago, all three kids were sitting at the kitchen table.  We were listening to music and the boys were talking about whether or not they had good hearing.  Gerry said that our whole family had bad hearing.  Before I could step in and protest with my expert hearing skills, Howie said “No, I have super hearing.  I can hear and see things that others can’t. I have what’s that word again?”

He paused.

“Oh yeah.  I have au-TIS-m.”

(so yes, the accent is on the wrong syl-LA-ble.  But still.)

Gerry looked over at me and didn’t say a word.  Neither did I.

“I have autism,” said Lewis matter-of-factly.  “I just have clogged ears.”

Howie looked at him and said, “You have autism too?  Well, you do have a super memory.  You know the whole grid of the Marvel Super Heroes characters on the Playstation game.”

“Yup,” I said.  “Lewis has autism just like you, Howie.”

“Does our whole family have autism?” Howie asked.

“No. ” I said.

Gerry looked at me and quietly asked, “Do I have autism?”

I shook my head no.

And that is how Lewis found out that he was autistic too. No big reveal. No grand plan. Just “yup, you’re autistic.”

Gerry got up from the table to get some more milk.  I pulled him aside for a moment.

I thought back to a conversation that Gerry and I had almost two years ago to the day:

“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?”

I touched Gerry’s arm and brought him into the other room.

“You remember you wanted me to tell Howie that he was autistic?  Well, I did.”

He looked right at me.

“Thank you,” he said.

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Since then, the topic has come up quite a bit.  My boys – all three of them – are attempting to understand what autism means to them and for them.  There have been attempts at one upping each other with “well, my autism means I can hear the grass grow!” and it makes for a good discussion about how brains work and no, you can’t really hear the grass grow. In quizzing Howie if he washed his hands, he told me that only someone with autism could have good enough smelling to smell how clean his hands are.

Then there was Howie’s question to me one morning at 5am: if everyone in the world had autism, does that mean no one in the world has autism?

For which I had absolutely no answer.

Just this afternoon came “Is autism sensory?”

And of course there was the moment when he told me his gift was part of his soul. When he realized he was born this way.

But my favorite comment came from Gerry last week.  We were talking about how all of us in the family have brains that work differently. It’s important to know that and understand why so instead of getting frustrated and struggling with the things that are hard for us, we can acknowledge the challenges and use our strengths to cope with them. We talked about what I wrote in part two:

“At some point I know we’ll have to talk about the challenges that autism brings.  Because that is as important as knowing the strengths. Part of understanding his differences is knowing that the sensory issues, the difficult time sitting still, the frustration over school projects and social interactions, and the perseverations – these are not because he’s not smart or incapable. “

I told him that this was why right now we’re focusing on positives that come with autism for Howie.

“I like that,” Gerry said. “I like that he looks it like it’s his superpower.”

Me too.  Me too.

my three superheroes

my three superheroes

My mama told me when I was young
We are all born superstars
She rolled my hair and put my lipstick on
In the glass of her boudoir

“There’s nothing wrong with loving who you are
She said, “‘Cause He made you perfect, babe”
“So hold your head up girl and you’ll go far,
Listen to me when I say”

I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way
Don’t hide yourself in regret
Just love yourself and you’re set
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga

For a great way to talk about autism with your child (or to learn more yourself), check out this great booklet from The Autism NOW Center and The Autistic Self Advocacy Network at http://autismnow.org/wp-content/uploads/2013/11/Welcome-to-the-Autistic-Community-Adolescent.pdf

Note: As I wrote in part one, I asked Howie if I could share this story (and parts one and three) here.  I told him that I had a blog and that I liked to write about things that happen in our lives on it.  His response?  “Sure.  You can share this with the blogosphere.”  Well, okay then.

Second note:  While this is part two, the story actually happened first – before part one.  But it took me a long time to get the words together for this part of the story.  I am hoping the order makes sense some day.

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It was a Sunday morning a few weeks ago.  Howie and I were headed out.  It’s a work day for me and it’s our Sunday tradition that he comes with me.

He stopped short in the garage and said “Hey!  That’s not right!”

I turned to see what he was looking at.  It was his snow shovel.  On it there’s a picture of a snowman saying “Brrr!” and he’s surrounded by four drawings of snowflakes.

“What do you mean?” I asked.

“All the snowflakes on that shovel are exactly the same.  That’s not right.  Every snowflake is different.”

“That’s true,” I said.  I looked over at the shovel.  “I would have never seen that.”

“I notice stuff like that.” he said.

I opened up the car door and helped him buckle his seat belt.  He’s getting faster at doing it himself, but when he’s thinking of other things the motor planning involved with buckling just doesn’t come as easily.

“Yes, you do notice stuff like that,” I said. “You always have.  You have a brain that sees things that others don’t.”

“I know,” he said.  And he named other things he notices.  Details on letters with different fonts.  Things that are just slightly out of place.

I pulled out of the driveway while he was talking.

“Does that make me a mutant?” he asked.

“What? No!”

I looked at his face in the rear view mirror as he looked a little crestfallen. Ah, like the X-Men…we’re in superhero mode again.

“You aren’t the only one in the world with that kind of brain.  But most people don’t.”

Smiles from the back seat.

I realized that this was the time.

I have spent the days since that moment we got Howie’s autism diagnosis in December 2009 wondering how I would talk to Howie about his autism.  I rehearsed it in my head many times.  Bought books.  Read blog posts.  Wanted to make sure I did it “right”.

We stopped at a light.

“So…” I said.  “That ability is a gift.”

“It is?”

“Yes.  You know what I mean by ‘gift’, right?  Not like a birthday party gift but more like a talent.  Something special you have.”

“I know! What is it? What’s it called?”

“It’s called autism.”

“So I have autism?”

“Yes.”

“Hmmmm.”

I decided to push it a little bit more.

“Hey, you know who else has a gift for seeing stuff like that?”

“Who?” he asked.

“Your friend Brooke.”

“Brooke has autism?”

AND THE BIGGEST SMILE FILLED UP MY REAR VIEW MIRROR.

I left the words hanging there for a moment as I turn into the parking lot for the sensory gym.

“Mom?”

“Yes?”

“Can I have the iPad?”

“Of course.  Once we’re inside.”

And we were done.

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A totally easy conversation about something not so easy.

I relayed the conversation to my friend Jess later on that morning, partly because it was through her words and guidance that I was even able to have that conversation that way, but also to thank her and Brooke for giving me the permission to share with Howie.

She texted me back with “You know what makes these conversations so hard? US.”

How true is that?

I wrote “It was just so natural as a progression from him seeing something no one else would ever notice…I figured it was a good moment to call it and not a challenging moment.”

That is where Howie and I left it that morning.   His autism is his gift.  He knows that his brain works differently than others.  He knows that it means he can smell things more intensely than others, that he can create things in his head and make them come to life, that he can interpret the world in a way that is uniquely his.

And he’s knows he’s not alone.  Knowing that he has a friend whose brain works a little differently is so important.  We’ve talked some more about other kids we know who are autistic and each time a smile fills the room.

At some point I know we’ll have to talk about the challenges that autism brings.  Because that is as important as knowing the strengths. Part of understanding his differences is knowing that the sensory issues, the difficult time sitting still, the frustration over school projects and social interactions, and the perseverations – these are not because he’s not smart or incapable.   Actually just the opposite.  Knowing that his brain works differently will help him understand that his aides in school are there not as a crutch or punishment but as a tool for support, just like his sensory tool box.  He needs to know that it’s okay to ask to leave the room when he can’t concentrate, and that it’s okay to ask for help not because he can’t do it but because he needs to frame it in a way that works for his unique brain.

But we aren’t at that point yet.  That conversation will come – it may be next week or next month or next year.  What I know now is that I can’t plan it.  It has to fit the time and place with no script or plan.

Unique to him.  Just like the snowflake that he is.

my favorite holiday present ever. Howie's teacher made a snow globe with his picture inside.  As Howie says "It shows my 'pizzazz'".

my favorite holiday present ever. Howie’s teacher made a snow globe with his picture inside. As Howie says “It shows my ‘pizzazz’”.

Whether life’s disabilities
Left you outcast, bullied or teased
Rejoice and love yourself today
‘Cause baby, you were born this way

I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga

Note: I asked Howie if I could share this story (and parts two and three) here.  I told him that I had a blog and that I liked to write about things that happen in our lives on it.  His response?  “Sure.  You can share this with the blogosphere.”  Well, okay then.

Second note:  While this is part one, the story actually comes after parts two and three chronologically.  But I felt like I had to share this one first.  I hope it makes sense in the long run.

I was finishing up at work tonight while Howie was playing on the iPad.  He was with me tonight as he is most nights that I’m at the sensory gym.

I closed up the computer and it made that whirring noise that laptops make as they wind down to hibernate.

“What’s that noise?” Howie asked.  “The one that sounds like…” and he mimicked the noise perfectly.

“Ah,” I said.  “That’s the computer shutting down.  You made that sound exactly right.”

I paused for a moment.

“You’ve always been good at that,” I told him.  “It’s all part of that amazing brain of yours.”

“It’s in my soul.” he said.

“What? What do you mean?”

“My gift.  It’s in my soul. It will always be a part of me.”

I stared at him from across the room.  He never looked up from his iPad the whole time.  But his words moved me to my core.

This incredible child of mine.  He knows what he has is special.  Different not less.

“You’ve had that gift since you were born you know,” I said.  “Like that song ‘Born This Way.”

He gave a little chuckle.  “Oh yeah.  It is like the song.”

And while maneuvering around his Minecraft world he quietly sang “You’re on the right track baby you were born this way.”

I walked over to him and gently kissed him on the cheek.

“I love you sweetie.  And that amazing brain of yours.”

A smile.

“Wanna see my minecart move on the tracks?”

Yes.  Yes I do.

holidaycard5

There’s nothin’ wrong with lovin’ who you are
She said, ’cause He made you perfect, babe
So hold your head up,
girl and you’ll go far
Listen to me when I say

I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga

Parts Two and Three (which are really parts one and two) about how Howie learned about autism are coming soon…

A few weeks ago, we got our notice for our annual IEP meeting for Howie.

And just like every other notice we’ve received for the past five years, this one included a one page purple sheet addressed to us as parents:

Please take a few moments to respond to the following questions.  Please return this completed sheet in the enclosed envelope.  Your comments will help the whole team develop an appropriate education program for your child.

1. What concerns do you, the parent (and student fourteen years of age or older) want to see addressed in the student’s educational program?

2. What are the student’s educational strengths, areas of interest, significant personal attributes, and personal accomplishments?

3. What is your vision for your child?  What would you like your child to be able to do within the next 1-3 years?  Beginning at age 14, think about your child’s preferences and interest.  Also think about desired outcomes in adult living, post secondary and working environments.

I’ve always taken these very seriously.  I return them every year with long detailed responses to each question, usually going on to the backside of the paper.  I felt like if they were asking, I was going to answer.

I sat with the sheet in front of me for a while.  I thought about how this whole year we’ve been working with Howie to help him identify his sensory needs and coping skills to help him stay in the classroom when he can, but also know when he can’t be there.  And to know that that’s okay. We’ve talked about him being his best advocate and using his words to explain what he’s thinking and feeling in the moment.  And working with his team to respect that and to really listen to what he’s saying.

For the first question…well I decided the best person to ask was Howie himself.  Waiting until he was fourteen didn’t make any sense.  So I asked him to tell me what was hard for him.  We talked about the times when he gets stressed and what calms him down.  I translated it into five issues we’d like addressed in this year’s program:

1) anxiety and stress in academics addressed through accommodations (specifically during time tests, reading out loud to peers, patience with learning new topics)

2) access to new sensory tools and accommodations for individual/group work (scribe, extended time, ability to type answers)

3) work on social/emotional regulation within the classroom space

4) development of self-advocacy skills

5) implementation of programs to work on rules/consequences and taking responsibility for his action.

My answer to the second question remained pretty consistent from the past five years.  I wrote that he’s very bright – strong in science and math concepts and loves social studies and history.  He loves to read on his own terms and enjoys project time and projects with some structure but without too many constraints.  He likes to feel like he’s the teacher and loves feeling popular in his class.

It was the vision question that made me stop for a very long time.

My vision statement for the past four years was this: We want Howie to show what he could do academically without his behaviors getting in the way.

I read that now and I cringe. I don’t even want to write that here.  But truth is that in the beginning I didn’t know what I know now.  I desperately wanted his teachers and the staff to see the bright incredible boy that I saw.  My concerns – my fears – were that they would never see that he had this incredible brain, a wicked sense of humor, and they would never know that he could read and write and draw just like every other kid in the class. I thought that his “behaviors” would keep him out of the classroom and away from the things that he excelled at. 

I didn’t know what the behaviors meant.  That they weren’t something to extinguish.  That we couldn’t “compliance training” them away.

Now I know.

I know that behavior is communication.  I know that stimming is not only okay, but necessary. I know the importance of learning how sensory and calming strategies work in different situations.  I know to look at my kid as my kid – not a series of antecedents, triggers, and behavior plans.  I know now to respect what he’s doing and listen to what he’s saying because by doing that – that’s how he achieves success.  Academically, socially and emotionally.

He has that success now with his current teacher and aides.  Educators who look at him as an individual and work with his strengths to overcome his challenges.

It was time to put all that into writing.

What is my vision for my child?

We would like Howie to be happy and enjoy school and learning in a classroom environment that meets and supports his needs.  This means helping him become a better self-advocate while creating a program that fits his individual strengths and challenges, with accommodations and supports necessary for academic, social and emotional success.

On Monday, we will sit down with his whole team and write an IEP that does just this. As we write objectives for pragmatics, sensorimotor breaks, and social/emotional growth,  the major thread through it all will be to  help him find ways to feel good and comfortable in his own skin, to feel respected for his differences, to advocate for himself and to – plain and simple – be happy.

That’s how he’ll show them what he can do.

By being himself.

photo(19)See my reflection change
Nothing ever stays the same
But you know the names The Game
We don’t know what it means
Nothing’s ever what it seems
Unforgiven…unforseen

I see the line in the sand
Time to find out, who I am
Looking back to see where I stand
Evolution, Evolution” – Evolution by Motorhead

I went into our local Paper Store to pick up a gift for a friend.

And it was like the universe was trying to tell me something after my last post:

photo(23)

It will be going up on the wall in Howie’s bedroom.  As a reminder for us both.

I love you You love me
We’re a happy family
With a great big hug and a kiss from me to you.
Won’t you say you love me too” – I Love You from Barney

This is a hard one to write.

A few days ago, my friend Jess met me at the sensory gym with her daughter Brooke.  It was the last day of our very long holiday break.  The exact purpose for the gym unfolded before our eyes as Howie and Brooke played together in the gym space while Jess and I talked.

After about 20 minutes of playing and running around, Howie came over to me and climbed into my lap.  Jess took out her phone and snapped a few photos.  She sent them to me later that afternoon:

photo credit: Jess

IMG_3709

IMG_3710

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(photo credit: Jess)

I spent the rest of that night thinking about those photos.

True confession time?

When I saw that last picture, my stomach hurt.  My heart hurt.

I could only see the sensory seeking in this picture.

His hand in my hair.  Crawling all over me.

The constant requests for squishes.  Asking to “tunnel” : when he puts his hands on my neck and asks me to press down on his hands with the side of my head.  Begging for “snuggles” that aren’t really hugs.  The “mom will sit on my feet” demands.

I saw a dysregulated kid who had been out of school and out of a routine for too long.

I sent Tim this text with the last photo: “Jess captured how I spent all of vacation.”

“Yup.” was the reply back.

The following morning, I changed my personal Facebook profile picture to that last photo.

The comments I got from friends and family ranged from “Love is…” to “That is just precious!” to “So sweet!”

And the one that made me cry: “That’s true love. You being a non-hugger and all – this is ALL love. Beautiful!”

Guilt came flooding in.

Everyone else saw love.  Affection.  Connection.

The emotions I didn’t see.

I get so wrapped up in everything SPD/autism and looking for the meaning and cause of every single action and reaction…

I sometimes miss the beauty and the “normalcy” of these moments.

Of so. many. moments.

Taking him out to shovel the snow is “heavy work”, not just an outside fun activity together.

Swinging high on the swings has a purpose, not play.

A hug isn’t a hug.  It’s a need for deep pressure.

Truth is, I’m the only one he will hug and snuggle with like this.  He refuses all personal touch from his dad and older brother and relatives.  He will squish under blankets and pillows, but skin to skin touch is reserved for me.  Has been since he was born.

Because I know too much, I saw it as a sensory issue for him.

But to everyone else, it’s a loving bond between mother and son.

Cue guilt.

After reading those comments, I clicked on the photo on my phone and looked at it again.

I took a step out of my “autism mom” role and became “Mom”.

IMG_3711

because I needed to look at it again…

In those photos there is the smile.  The calm.  The love.

I can see that’s what Howie sees when he looks at me.

This is our connection.  Our affection.

His safe place.  Where he feels the most at peace.

I see it all.

And I feel at peace now too.

love I get so lost, sometimes
days pass and this emptiness fills my heart
when I want to run away
I drive off in my car
but whichever way I go
I come back to the place you are

all my instincts, they return
and the grand facade, so soon will burn
without a noise, without my pride
I reach out from the inside

in your eyes
the light the heat
in your eyes
I am complete
in your eyes” – In Your Eyes by Peter Gabriel

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