Howie was on the floor of his room. He was wrapped up in a towel, drying off from the shower.

“Mom. Do I look in sorts?”

“I don’t know. Not really I guess. Maybe a little? Are you?”

“No,” he responded. “I’m a little out of sorts.”

“I could tell. You think it’s because you’re not feeling well?” He had been battling a mystery fever for the past two days. No other symptoms, just a low grade fever.

“No. Not that.” He was looking up – not at my face but just passed me.

I stood over him as he stayed cocooned up on the floor.

“Why do you think you’re out of sorts?”

“Sensory overload,” he replied. His eyes shifted and immediately connected with mine.

“Really. What overloaded you?”

He sighed.

“Life.”

Howie paused for a moment.

“Sometimes that just happens,” he said.  “I need a fidget. Like something rubber. Or a ball.”

He said it in a very quiet, almost nasally voice. It’s the voice I recognize when he’s uncomfortable.

I looked around quickly in his room.

“I found a small Minecraft Creeper figure. Will this do?”

“Yeah.”

He took it from me and smiled.

I took a quick picture of him on the floor with the creeper and showed him his happy face. He stayed on the floor for a few minutes, rubbing his hands over the figure and squeezing it.

I left the room to help Lewis into the shower. When I returned, he was dressed in his pajamas and in bed.

“Can I share the picture I took of you with the creeper to show people how you look when you’re back in sorts?”

He snuggled under the covers and grabbed his weighted stuffed animal.

“No,” he said. “Don’t share it. Can I have a Mom squish?”

I leaned over and squished him tight. Part of his self-advocacy has to be the right of refusal of what I share and what I don’t.

“I won’t share it. I promise. I love you.”

I took my position at the end of his bed. He slid his legs under mine and fell asleep.

**********

I could write about the sheer enormity of that conversation and what it means for him, for me, and for the people in his world. About how much hard work he has done with his teachers and therapists to get here – to not only understand his body but express it in a way that we could understand. I could write about all the signs I missed during the day today that could have told me what he so eloquently did tonight and even though I preach “behavior is communication”, I ignored it all.

I could write that.

But right now I am just listening to him sleep. Soft, even breaths.

The ones that I now recognize come when he’s back “in sorts”.

And I’m just going to stay here a while.

A photo from a different wrapped in a towel day. One that I had permission to share in the past.

A photo from a different wrapped in a towel day. One that I’ve had permission to share in the past.

 Walk with me the diamond road
Tell me every story told
Give me something of your soul
That I can hold onto
I want to wake up to the sound of waves
Crashing on a brand new day
Keep the memory of your face
But wipe the pain away” – 
Diamond Road by Sheryl Crow

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The boys made a memory jar for Tim for Father’s Day.

I just knew there was no way they could create a piece of artwork or something homemade – the pressure would be too great and we’d end up where we were last year.

So I stole this gift idea from my friend Jess.

I asked the boys some questions and recorded each answer on a slip of paper.

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And because the answers were so perfect, I had to share them here.

What’s your favorite thing you did with Dad this year?

G: Learning how to play guitar and going to all the concerts

H: Going on the water slides at Great Wolf Lodge

L: Playing Hot Wheels

What is something that dad did that made you laugh?

G: All his funny jokes

H: When he said the slide at Great Wolf was like a toilet

L: When he calls things bathroom words

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What is your favorite thing that Dad cooks?

G: Homemade pizza

H: Pork chops, chicken skewers and hamburgers

L: Macaroni and cheese, grilled cheese and quesadillas

What do you like to do with Dad?

G: Go to Guitar Center

H: Go on water slides

L: Watch the Palladia channel on TV

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What would you like Dad to teach you this year?

G: How to mow the lawn

H: How to armpit fart since I’m not very good at it.

L: How to ride a bike with two wheels.

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Now my answers.

My favorite thing we did this year? We were a team – through school meetings and sports activities and everything in between.  You didn’t miss one baseball game or concert or IEP meeting.  You arranged your schedule to be there for the boys and for me.  We took “divide and conquer” to a new level to make sure each kid had alone time and quiet time.

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At the meet and greet with Joe Bonamassa

At the meet and greet with Joe Bonamassa

Something that made me laugh? I have many specific private moments when I laughed until I cried.  And then there were the times when I wanted to cry, you made me laugh instead.  Holding my hand through it all.

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My favorite thing you cook? Everything.  Duh.

That's right.  That's bacon wrapped meatloaf.

That’s right. That’s bacon wrapped meatloaf.

What do I like to do with you? Again, everything.

What would I like you to teach me this year?  I want to find my “fun” again.  I see how the boys turn to you for the games, the laughs, the “let’s do this” together.  You understand the boys in ways I can’t.

I want to learn all that from you.

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227620_10200398807759391_1141309109_nHappy Father’s Day

If I could save time in a bottle
The first thing that I’d like to do
Is to save every day till eternity passes away
Just to spend them with you

If I could make days last forever
If words could make wishes come true
I’d save every day like a treasure and then
Again, I would spend them with you

But there never seems to be enough time
To do the things you want to do, once you find them
I’ve looked around enough to know
That you’re the one I want to go through time with.” – Time In A Bottle by Jim Croce (which also happens to be the song from our wedding)

note: I was given complementary passes for food, accommodations and other activities to attend the grand opening event at Great Wolf Lodge in Fitchburg, MA.  But all opinions are my own.

We had seen the commercials for a long time: Great Wolf Lodge was coming to the New England area!  My kids – avid water park fans but haters of bugs and heat – were so intrigued by the idea of an indoor water park that when we were offered the chance to be there on opening day, we couldn’t say no.  Even though it was on a school night.

We prepped for the trip the way we do with most new places.  I spent a lot of time with the boys on The Great Wolf Lodge website so not only did we know what would be there, we knew what rides and activities were going to be appropriate for their skill level and height.  They had pictures of the rooms online as well and we “walked” through the park, learning about each of the rides and requirements.  We created our own social story so there would be no surprises.

We arrived in the evening around dinner time and it was a little late for us to use the water park that night. There was no disappointment, however, since there was still plenty to do:

getting our wolf ears

getting our wolf ears

In the Howlin’ Timbers part of the park, there is a nine hole indoor golf course.  It was perfect for Howie and Lewis.  They had a blast playing the course.

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Mini Golf

There is also a giant arcade area near the restaurants and lobby.  Not surprisingly, this is where my kids wanted to stay the longest.  Like many arcades these days, the games are paid for on a pre-paid card so there’s no fumbling with money or tokens for each game.  I was amazed at how quiet the arcade was.  Usually arcades are not only my kids’ sensory overload nightmare, but mine as well.  The Great Wolf Arcade was quiet and calm. So we were able to stay and play for a long time.

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skee ball anyone?

Alongside the arcade is a pizza place and ice cream shop.  We opted for pizza to go and brought it back up to our room.  I have to tell you – I have incredibly picky pizza eaters.  The “Hungry As A Wolf” pizza passed the test from all three of them. That’s almost unheard of in our house.

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mmmmm…pepperoni

We were given a KidCabin Suite in the newest part of the resort, overlooking the Howlin’ Timbers play area.  The room was one queen bed plus a fold out couch and then a separate area with a bunk bed and day bed.  My kids settled into their own special area, which also has its own TV.  They were in heaven.

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Bottom bunk man. And yes, wifi is included free at the resort. We asked ahead of time.

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Oldest kid gets the top bunk

At the risk of TMI, this was the first time in our vacations as a family that Tim and I shared a bed at a hotel.  And the kids actually stayed in their beds.  That doesn’t even happen at home.

The kids had the buffet breakfast at the Lodge Wood Fire Grill restaurant in the morning.  Here’s where they were annoyed at me for taking a picture before they could eat:

ok...maybe only two were annoyed with me...

ok…maybe only two were annoyed with me…

There’s also a Dunkin Donuts on the premises for breakfast, lunch, dinner and whenever you need it.  Because this is Massachusetts and there needs to be one on every corner.  Thank goodness.

We hurried back to the hotel room to change into our swim clothes.  And off we went.

The water park area of the resort is split into two sides.  Great Wolf took over an existing water park area so one side is where the original park had their waterslides and the other side is all new.  It seem to cut down on the crowds and confusion and it wasn’t so overwhelming.  It also made it easier to find each other as Tim and I played “divide and conquer” with the kids.  He did the bigger slides with Gerry and Howie and I spent most of my time with Lewis in the Tadpole Pond area.

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obstacle course on Big Foot Pass

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The best way ever for my kids to fight each other

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lazy river riders

In all, my family tried out every ride at the water park.  Gerry’s favorite was the Howlin’ Tornado:

The Howlin' Tornado.

The Howlin’ Tornado.

That was the view of the Howlin’ Tornado from our hotel room.  Through the rain.  That’s right – it poured the whole day we were there.  Did we care?  Nope.

Howie’s favorite was Alberta Falls – the dark tunnel side.  It may or may not be because Tim told him it was like they were getting flushed down a toilet.

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Alberta Falls

And Lewis was incredibly happy to stay at the little kid area.  And I was incredibly happy to have him stay here.  I actually sat down.  At a water park.  It was a miracle.

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Life jackets are provided for all ages and all sizes at the park but we opted to bring our own.  Considering the fact that I brought three suits for each kid because I didn’t know what would fit or feel right for them in the moment, the more familiar we are with something, the better it is.  Our own life jackets bring that sensory comfort level.

Speaking of sensory issues, I kept checking in with Howie about how he was doing and feeling along the way.  The water park was not crowded but it was very echoey and I was worried that he would be on noise overload.  He kept telling me he was fine.  The only thing that seemed to bother him were the smells in the area near our hotel room.  Everything was new : paint, carpet, beds.  Those smells were slightly overpowering.  But there was no heavy chlorine smell in the park and no overly bright lights.  Every half hour or so, there was an alarm that went off at the wave pool.  But that was it. All of the places where I expected that he would have a hard time, he did great.  All of the kids did great.  I was amazed.

We had a late check out of 2pm, so we stayed at the water park area until about 1:30.  We changed quickly in the hotel room and checked out.

Our water park passes were good though until the park closed that night.  There are lockers and changing rooms if we wanted to stay.  We chose to check out the other parts of the Howlin’ Timbers Play Park instead.

The ropes course is included with the water park passes.  So we had to try that.  And by”we” I mean everyone else in my family that is not me:

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getting strapped in

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Who is this crazy kid up so high?

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The lower ropes course was more their speed.

I was super impressed by the staff at Great Wolf and how attentive they were.  When the line to go on the ropes course got long, two other staff members appeared out of nowhere to assist on the course.  The staff all seemed to be local as well, as indicated by their town on their name tags.  I love the boost to the local Worcester County economy with that.

After the kids were off the ropes course, they played two games of bowling each.  No rental shoes needed.  And bumpers for the kids so no gutter balls.  This was a big hit with my guys.  It was also not noisy at all like many bowling alleys.  Again that made it so much easier to stay and play.

 

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Strike!

There were several things that we didn’t get too because we just ran out of time and energy.  There’s a whole MagiQuest game and movie theater that we didn’t even attempt.  It looked like fun but we had to save something for next time.  There’s also a kid spa and a story time that we skipped.  My kids aren’t fans of people in costumes so we stayed away from those areas.

Because I am always looking through my special needs parenting glasses, there are a few things that stood out to me at the park.  First – it was very quiet.  Many areas were carpeted so there wasn’t a lot of noise bouncing off the floor and walls.  The lighting was also natural light in many places in the park.  The arcade was calm and quieter than most arcades I’ve been in.  There was also a variety of food choices on the menus for the restaurants so there seemed to be something for everyone.  We did bring a lot of our own food but every room has a decent sized fridge and microwave so that wasn’t an issue at all.

Now we were there for the grand opening and it wasn’t very crowded.  We’ll have to go back to see if all these things stay the same when the resort is full.

I also liked that everything was on their website so we could preview it ahead of time, even the room layouts. That was huge in making sure my kids knew everything before we left.  We aren’t the “surprise!  Here we are!” kind of family.

There are definitely some things to know before you go.  You can’t purchase day passes only to the resort so you have to stay overnight. The water park passes are included as part of the hotel room, as is the ropes course.  While there, I was thinking how wonderful it would be to have our kids’ home therapists with us to help with turn taking, peer interactions, and meals, yet I didn’t actually want to pay for a hotel room for them. Considering the number of special needs families who may need to bring a babysitter/therapist/teacher along to help out, I did ask if you can purchase additional day passes though for people joining your party who are not staying over.  The answer was yes to that. Definitely ask when you make the reservation to see how many day passes you are allowed to have.

Your room key is a chip in the water park bracelet so there’s no possibility of losing your keys (or having them stolen) while swimming and you can choose whose bracelets are activated as keys.  We did have to warn the kids that they would need to wear the bracelets all the time as this is usually a sensory issues for all of my kids.

When we got home. the kids were asking when we were going to go again.

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This mini-vacation came exactly at the right time for our family.  We needed a stress free time away from the house where we could just relax and be ourselves.

We got that at Great Wolf Lodge.

I know we will be back very soon.

Vacation
All I ever wanted
Vacation
Had to get away…” – Vacation by The Go-Gos

 

 

 

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

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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.

**********

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.

**********

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.

**********

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

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

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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

(Editor’s Note: I was contacted by Fun and Function with an incredible offer: would you like an equipment donation to your nonprofit sensory gym? No strings attached?  The answer was an ABSOLUTELY YES AND THANK YOU! And, well, when someone does something that amazing for you, of course I’m going to write about it.  I’m a blogger and a business owner.  That’s what I do.)

The famous Ghandi quote. On the wall in our office at SenseAbility Gym.

The famous Ghandi quote. On the wall in our office at SenseAbility Gym.

It’s an interesting journey – this special needs parenting gig.

When you get your child’s diagnosis, whatever it might be, initially you can feel quite alone.  You think no one has a kid like mine.  No one will understand the challenges he faces.  No one knows what he’s feeling or what I’m feeling.

And then slowly you find your village.  Maybe it’s in person at the drop off for your child’s special preschool program.  Maybe it’s through a support group.  Maybe it’s online.  At some point, you discover that you are not alone and neither is your child.  There are people out there who “get it” and will do whatever it takes to help you “get it” too.

I’m very lucky to have found my village both in person and online.  I have friends who have helped me when I was lost and friends who understand my children better than I do.  We have a team of support, not just for me but for our whole family.

And it’s because of that support that my friend Tina and I were able to open our sensory gym.  We saw a need and wanted to fill it.  We believed in the fact that all children deserved access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics. We wanted the gym to be a place where parents and children could go to socialize with other families who shared similar challenges. To help them find that village.

As we started the business, we found that there were other businesses out there with a similar goal.

One of these is Fun and Function. It was started by Aviva Weiss, an occupational therapist and a mom of six.  She was frustrated by the lack of fun toys for children with special needs so she began creating her own.  And now she’s on a mission to make “different” play fun.

Just like us.

Her company contacted me recently with this incredible offer: “At Fun and Function we believe that special needs children are awesome, and are always on the prowl to connect with likeminded individuals. We would be honored to make a donation to your SenseAbility Gym and we were wondering if there was something in particular that you might have your eye on.”

Who does that?  Oh right.  Companies started by people who “get it”.

After saying something like “Oh my goodness, thank you!  This is huge and amazing!” I asked if there was a way that I could interview Ms. Weiss for our blog.

I asked her what inspired her to start the business and where the idea came from.  Ms. Weiss answered with a familiar answer – she was inspired right at home, by her daughter.  Her daughter needed the types of equipment for deep pressure and calming, but at the time all she could find were things that were too clinical looking and/or very expensive.  She knew she had to change that and knew that if her daughter needed it, there were other kids out there who would need it as well.

We talked about the challenges she’s faced along the way and what kept her going.  We discussed how hard it is to start your own business, to find the money to do it, to spend your own money to keep things going.  But the mission keeps you going – knowing that you are helping families just like yours.

Every word she said rang true for me.  It was as if she was saying the words in my head – all the reasons why we started SenseAbility Gym were the same, all the challenges were the same, and the driving force is the same.

I asked the question that many people ask us here – is there one thing that could help a child with sensory processing disorder?  If you could recommend one product, what would it be?

She answered with a very familiar answer.  There is no one thing.  Every child is different.  Every child’s needs are different.  And they change.  There is no one sensory “tool” that helps every person.  “I can tell you what our top sellers are.  Things like our weighted compression vests are very popular and have been from the start,” she said.  “But not every child needs every item on this list.  It’s why we created the ‘Find Your Solution‘ filter at the bottom of our website.  Parents, caregivers, teachers and adults can enter in their age, budget and need and we’ll help them find the best products for them at the right price.”

I asked her what those favorite items were and what were best sellers from the website.  She suggested their weighted compression vest, the Soft Saddle Scooter, Sammy the Seal Swing, Social Emotion and Guess How I Feel Games, Squishy Gel CushionsCool Chews and Bite Bands.

Here at SenseAbility Gym, we’re in love with the Air Lite Junior Bolster Swing.  Generously donated to us by Fun and Function.

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Ms. Weiss and I talked for about 15 minutes until I asked the question that I ask many parents who have older children.  What advice do you have for families who are just starting out on this journey?

Her answer was the best.  Don’t let anyone tell you how to feel or what your child won’t be able to do. It’s okay to grieve and be angry.  But then it’s time to get back to figuring out with your child what they need and what can help them.  Then anything is possible.

Anything is possible.  And when you believe in your child and yourself there isn’t anything they – and you – can’t do.

Like start your own business.  Or your build own community.

I am so grateful to Aviva Weiss and people like her who have blazed the trail for parents like me.

All it takes is an idea and the will to do it.

She found her will by looking at her daughter.

I found it by looking into these eyes here.

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Build it and they will come.

I had a lot of good intentions
Sit around for fifty years and then collect a pension,
Started seeing the road to hell and just where it starts.
But my life is more than a vision
The sweetest part is acting after making a decision
I started seeing the whole as a sum of its parts.
My life is part of the global life
I’d found myself becoming more immobile
When I’d think a little girl in the world can’t do anything.
A distant nation my community
A street person my responsibility
If I have a care in the world I have a gift to bring.” – Hammer and Nail by Indigo Girls

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