June 2011


It’s my son’s “Happy Place”.

For the past seven years in June we’ve been taking the kids to Story Land amusement park in Glen, New Hampshire.  Our first year was with just one kid.  Now we’re a loud and rowdy family of five.

Story Land has become Howie’s place. Something clicked with him and this park when he was two.  Before I even knew what a stim was, he would sit hunched over the map on our floor, rocking back and forth.  He knew where every ride was, where the eating places were, and where the exit was (“X marks the spot”).  He would talk about it constantly.  And those nights before we discovered melatonin – when Howie would take hours to fall asleep and wake up at 2am screaming – Tim would take out his phone and scroll through the pictures of our previous trip.  “See, that’s you on the flying shoes!  And that’s you and Mom on the train.  Look, that’s you driving a car.” Quietly and slowly, Howie would fall back to sleep again.

Every day he asks how many more “sleeps” until Story Land.  And when I say every day, I mean every day.  Three hundred and sixty days a year for the past three years.  I’m subtracting out the days that we’re actually at the park.  In the winter he asks how long before the snow melts and Story Land is open.  In the spring he asks how long before the workers open up the park.  In the summer he asks to show him on the calendar the number of the day that we’re going.  And when we return, he asks when we’re going back.

Our trip up there was last week.  Maybe it’s because I’m starting to understand him better, but I finally could see what he sees.

I saw a place where all three of my kids could ride on every ride.

How Tall Are you?

I saw a place where stories come to life – not in a scary way with lots of people in costumes (because we don’t do people in costumes) – but in a nice gentle approach-if-you-want kind of way.

Cinderella's Pumpkin

I saw a place where the kids didn’t have to hold my hand, but they could hold each other’s hands.

this way to Storyland

storyland hug

I saw a place where kids could drive their parents around in cars.

Driving Miss Mommy

I saw a place that had food that was safe to eat, because they publish all of their food’s ingredients online so we knew what we could buy.

eating our way through the park

I saw a place where all three of my boys were happy.  No fighting.  No complaining about stimming or verbal outbursts.  Happy.  All at the same time.  For three days straight.

Let's Get Together At Storyland

I took a moment to look through the eyes of my five year old.  What I saw was magic.

You can have Disney.  We’ll take Story Land.

Three hundred and fifty five days until we go back.

"The sun will always shine where you stand
Depending in which land
You may find yourself.
Now you have my blessing, go your way.
Happiness runs in a circular motion
Thought is like a little boat upon the sea.
Everybody is a part of everything anyway,
You can have everything if you let yourself be.
Happiness runs, happiness runs.
Happiness runs, happiness runs." - Happiness Runs by Donovan

So, how much sharing is too much?

It’s Wednesday morning, and my family was in the lobby of our hotel.  We’re on our annual trek to our favorite place on Earth: Storyland in New Hampshire.  We’ve come down for the hotel’s free breakfast, and we’re crowded around the tiny table.

Well, not all of us.  I had removed Howie from the sitting area because his behavior was becoming quite disruptive.  I plopped him down in the chair in front of the reservation desk, handed him a Storyland map, and told him to plan out our day.  I strategically placed myself halfway between him and our table, so I could keep an eye on everyone.  And suck down my free coffee at the same time.

At that moment, a mom and her son came in.  He looked to be about seven years old or so.  She asked if I was waiting for a table, and as I gestured to my left and right I explained that I was keeping track of my crew.  She smiled and grabbed a table in the middle of the room.  Her husband and daughter came in behind them.

A few minutes later, I heard her tell her son to “just go out and ask them what they like about Storyland.  He has a map right there.”  Her son comes right out, glances back at his mom, and turns to Howie.

“So, what do you like about Storyland?”

Howie’s eyes lit up.  It was  like asking Dino Dan what he likes about dinosaurs.

(in case you don’t know, Storyland is Howie’s second obsession after Hot Wheels cars.  He asks almost every day “how many more sleeps” until we’re going.  And on the days when he doesn’t ask, he talks about his favorite rides.  Constantly.)

For a good ten minutes the conversation flowed.  “I like the polar coaster!” “I’m going on the Flying Fish!” “Do you like the train?” “I’m going to ride on the green one!” “Did you know there’s a circus”…and on and on and on…until:

“Mom!  I made a new friend!”

From Howie.

Of course, he didn’t know the kid’s name or anything about him.  They just connected on Storyland and that was enough.  Frankly I was surprised he didn’t say “I made a new best friend!”

The rest of us finished our breakfast and headed back up to the room to get ready for our big day at the park.  Our new friend Gabe (yes, we now knew his name) and his dad rode up with us.  And they were still talking about Storyland.

We said our goodbyes at the elevator and the perfunctory “see you at the park”, gathered our things and went our separate ways.

In the parking lot, I realized I had forgotten something in the room.  I headed back to the lobby, and ran into Gabe’s dad outside of the door.

Something overtook me at that moment.  I don’t know what it was.  For some reason, I was compelled to talk to him.  To thank him.  So I did.

“I just have to thank you and your son.  He’s a great kid and my boys had a nice time talking with him about the park.  My five year old…um…he has high functioning autism, and it’s hard for him to relate to kids sometimes, so…um…that was really great for me and him.  Thank you.”  And I turned and walked into the hotel.  His wife was walking out right then.  She looked at me quizzically and said “I guess I’ll have him fill me in.”

I have never shared that information with a stranger.  A complete and total stranger. There was no immediate reason for me to tell them any of that.  The only time I’ve ever told anyone about Howie’s autism was as an explanation for his behavior.  And it’s only to a person who we already know.  I’ve never considered it anyone’s business before.  And clearly, they didn’t need to know it.  They came into breakfast five minutes past the verbal outbursts, the refusal to eat, and the inability to sit still.  All they saw was a perfectly behaved five year old, talking about his favorite vacation spot.

But I saw something different.  I saw my son connect with another young boy – one that he had never met before.

A boy that seemed a little like…mine.

What was it that got my radar up?  Was it the excited way that he talked too?  Or was it the fact that his mother asked me twice if he was bothering my boys?  Or was it the little tears that welled up in her eyes when I told her that Howie said that he made a new friend?

Something compelled me to tell that family our story.  It was the thought that maybe we shared something else besides our love for the Whirling Whale ride.

We saw the family two times at the park that day.  Once they were getting off one ride, and we were getting on.  There was a quick hello, and that was it.  Later on, I saw the mom.  She was walking alone, talking on the phone.  She glanced at me, and looked away.

I’m guessing now that my radar was off that day.  I was wrong. And I scared her.

I expected a teary “yes, us too!”. What I got was a “I don’t know you.”

I spent the rest of the day thinking about this encounter.  What did I expect to gain from sharing, or in this case, oversharing?  Why did I need them to know?  Why did I need to connect with this family?  They were strangers then and are strangers now.

Why did I need to make my son the topic of her next mom’s night out?

I guess it’s that feeling of not wanting to be alone.  I thought she’d be a mom who “gets it”.  Instead, she was a mom who didn’t want to understand.

However…

I’m not sure I’d do anything different any other time.

You just never know when you’ll get that teary “yes, us too.”

That moment can make all the difference.

footprints

Let's get together at Storyland

(more about our actual visit to Storyland in my next post.  As soon as I finish unpacking…could be weeks…)

And the trouble I find is that the trouble finds me
It’s a part of my mind it begins with a dream
And a feeling I get when I look and I see
That this world is a puzzle, I’ll find all of the pieces
And put it all together, and then I’ll rearrange it
I’ll follow it forever
Always be as strange as it seems
Nobody ever told me not to try” – Talk of the Town by Jack Johnson

Sometimes, words do speak louder than actions.

Last month, my husband was away on his annual business trip.  I know that we’re lucky that he doesn’t travel that often, but when he does, it takes its toll quickly.  On me and the boys.

It was Tuesday evening – the third night into his trip.  It had been a long difficult day up to this point.  I was clearly at the end of my rope with the boys, and them with me.  The “good night” phone call was hastily arranged across two time zones, with an attempt to fit it in between bedtime for the kids and dinner time for Tim.

Howie got on the phone first and I put it on speakerphone.  His ability to communicate on the phone is a relatively new phenomenon, but he was excited to talk to Daddy that night.

They chatted a bit about Howie’s day at school (a tough one) and then the conversation turned to Hot Wheels, or more specifically, my inability to create a decent Hot Wheels track.

“Dad!”, he said with pain in his voice.  “Dad!  When are you coming home?  I just really really miss you!”

My eyes welled up with tears.  There was a brief silence on the other end of the phone.  Across 2000 miles, Tim and I were processing the same thing at the same time.  This was the first unprompted expression of affection for his dad.  Ever.

I’m the one who is usually on the receiving end of what’s perceived as affection : the hugs, the desperate searches through the house when I’m in the shower, the person he demands in the middle of the night.

But his dad is the one who connects with him on the “important” things.  The one who lets him help fix the broken shower pipe and takes him on a tour of the basement to follow the path of the water.  The one who hands him the screwdriver as they replace the burnt out bulb in the brake light of my van.  The one who works with him to create the most elaborate and most awesome of Hot Wheels tracks.

But until this point, he had never been able to verbalize it.

Tim and I talked about it later that night.  We were both still a little shell shocked.

“I guess absence makes the heart grow fonder?” Tim said.

Something like that.

**********

They say that women tend to marry their fathers.  On paper, it would look like the complete opposite for me.  However, I married a man who puts his family first above all else.  A guy who understands what it means to be a dad, whether it’s playing ball in the yard or reading a bedtime story or…crawling around on the floor racing Hot Wheels cars.  That was my dad too.  Exactly.

Happy Father’s Day to my amazing husband and to all the fathers out there who go above and beyond for their kids.

Happy Father’s Day to the fathers-to-be…and the fathers-that-should-be.  You deserve to feel the joy of watching your children grow before your eyes.

And Happy Father’s Day to my dad, who I miss more with every passing day.  Absence really does make the heart grow fonder.

Well I know it’s kind of late
I hope I didn’t wake you
But what I got to 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 not you, it’s me.

I’m at Hopeful Parents today.  Sort of.

Hopeful Parents

You're So Vain

Click HERE for You’re So Vain at Hopeful Parents

(and while you’re there, click around.  There’s some great posts by some amazing special needs parents)

If life had a “rewind” button, I would have used it today.

The day started out as an exercise in logistics.  Gerry woke up with ear pain, which I knew was serious considering his class was going bowling this morning.  Somehow I needed to get him to the doctor after driving Howie to school and before Lewis’ speech therapy appointment at the house.  Already late for preschool, I was on the phone with the doctor’s office while simultaneously trying to get out the door with three non-compliant boys.  And my car keys?  Nowhere to be found.

Yes, for the second time in 48 hours, I had misplaced them.  Completely.

I found my spare keys by some miracle and pushed the kids out the door.  We had to be on time.  Howie’s class was going up to kindergarten for the last visit, and he was taking the big yellow bus.  Since he won’t be taking it in the fall, we didn’t want to miss this.

I quickly dropped Howie off and flew to the doctor’s office.  An hour later, we were out the door with “it’s just a virus” and made our way back home with 30 minutes to spare before Lewis’ speech therapist arrived.  Just enough time for a snack and a very quick house cleaning.  By that I mean I picked up all the Hot Wheels track in the living room so they had a place to sit.  I do not mean that I cleaned up anything else.

About 30 minutes in to the speech session, the phone rings.  It’s preschool.  My heart jumps into my throat.

It’s Howie’s teacher.  They’re just back from their kindergarten visit and she wanted to fill me in.  For this visit, they purposely went when the cafeteria would be busy…and smelly.  They wanted Howie (and the other kids) to experience this first hand to see how they would react.

Apparently Howie reacted by stopping in his tracks halfway down the hall, and covered his nose.  For the whole hour.  The smell of bacon and french toast cooking hit him hard.

This wouldn’t be such a big deal if, of course, his new kindergarten classroom wasn’t directly across from the cafeteria.  This smell aversion will be a daily occurrence once school starts in the fall.

On the phone, we immediately brainstormed some plans of action.  Social stories about smells.  A “smell desensitization” program starting this summer at home, with us cooking different foods.  Buying stock in Yankee Candle.

I hung up the phone and my wheels were spinning.  Just like any autism parent, my brain immediately went into fix it mode.  I sent out e-mails asking for advice from my fellow autism moms.  I was on it 100%.

Then, from the other room…

“Alysia, do you have a minute for a question?”

It’s Lewis’ speech/language pathologist.  Who I adore.  And this sounded bad.

“How do I ask you this without stressing you out?”

Um…too late.

“How long do you think it would take you to get a full developmental evaluation set up for Lewis?”

What?  You mean like the one I canceled back in March because I thought everything was fine?  Say that again?

“I’m seeing things that worry me.  More, I’m NOT seeing things.  Have you noticed that when he plays he gets fixated on one thing?  I kept trying to move on from the fruit but he won’t change gears.  And he’s only imitating me with play, he’s not initiating the play.”

I don’t know.  I was so focused on the fact that he was “pretend playing” at all that I never noticed HOW he was playing.

“Does he make eye contact with you when he asks you for things?”

The better question is, do I make eye contact with HIM?  I don’t know.  I usually have one eye on his brother making sure no one is getting into trouble…

“I just thought it was best to talk about it now, and not 5 months from now, in case it takes you a while to get an appointment.  He’s a big imitator.  I’m not sure how you run your house in order to help your other son…”

You can stop right there.  I don’t run my house at all.  Clearly.  And yes, I have no idea what’s going on either.  Is he imitating his brother or is this his behavior?  He’s the polar opposite of Howie.  Receptive language is right on target, expressive language is behind.  Howie was the reverse.  With both, behavior is a struggle.

And no, I have lost all concept of what is “normal” anymore.

I e-mail my friends with this update.  One friend writes me back “Deep breaths.  And chocolate.”  I reply that I’ve already inhaled an entire box of cookies.

I make two quick calls to “reschedule” the appointment that we canceled back in March.  But no time for tears or wallowing, because I had to pick up Howie for an appointment with a pediatric urologist.  An hour away.

I run out to the car.  Tim has thankfully come home to be with the two other boys.  Turn the car on, warning bells ring.  I have a brake light out.

I call to Tim: “My left brake light is out.  Will that be okay?”

His response: “It’s going to have to be.”

We were, of course, late for the appointment, partly due to traffic and partly Howie became fixated on the revolving doors at the hospital.  In the waiting room, the questions became repetitive.  “Why am I here?” “Remember when it hurt when you peed a while ago?” “But I’m better now.  Why am I here?”

The doctor’s exam was quick and he was quite good with Howie.  He turned to me and we began to chat about how to keep this from happening.

“With kids like him, this could be a recurring problem.”

Kids like him??  What does he mean?

I turned and looked over at my son.  Spinning, pacing, rocking back and forth on his legs.  Flicking his fingers.  Babbling nonsense words.

Oh.  Kids like him.  Kids with autism.

I wanted to cry.

I thanked him for his help and told him we’d be in touch for our next steps.  The ride home was an exercise in perseveration – there was a bridge at the doctor’s office near the parking garage.  He wanted to run on it.  I had no idea until we were already on the highway.  Forty minutes of “Turn this car around!” and “I’m going to ruin your life!” and “Mom, you’re so ANNOYING!”

(chances are, this won’t be the last time I hear that.)

The next several hours were completely unsettled.  I lost track of how many times time outs I issued.

**********

I’ve been spending the rest of this night eating my mint chocolate brownie (graciously delivered by my amazing friend) and thinking over the day.  Everything just seemed to pile on.  But I kept going back to what Tim said about my brake lights when I asked if it was going to be okay.

“It’s going to have to be.”

And that’s what I have to remember.  That no matter what comes our way, we’ll figure out how to make it okay.  Whatever steps we need to take to make things right, we’ll do it.

It was just one bad day, right?  Just one bad day.

“Sometimes the system goes on the blink
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I’m not wrong

Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me don’t lie
You work at a smile and you go for a ride
You had a bad day
You’ve seen what you like
And how does it feel for one more time
You had a bad day
You had a bad day” – Bad Day by Daniel Powter

“Mom! iPad Angry Birds?” – my two year old this morning

I remember the first time I played Angry Birds.  I was on the floor next to my two year old’s crib, hoping he’d fall asleep fast.  I had so much to do, but he won’t fall asleep without me laying there.  I borrowed my husband’s iPhone to check Facebook.  Up to this point, I had avoided playing Angry Birds.  I’m not a fan of video games, mostly because I’m not very good at them.  But it was a quite night on Facebook, and I was desperately trying to stay awake in the dark.  So I played.

I stunk at it.

So I played again.  And again.  And again until I beat that first level.

An hour passed.  My son was long asleep.  I was still playing.

The rush I felt that night was one that I had not felt in a while.  It wasn’t addiction or compulsion.  I could walk away.

It was more a sense of…accomplishment.  For the first time in a long time, I was feeling like I finished something.

A lifetime ago when I used to work outside the home, I had that feeling all of the time.  I would start a project and see it to completion.  The accolades and rewards would come in with a “job well done” from my boss.  Then I’d be assigned a new project, have more responsibilities, and see that through as well.  The reviews would come in, and I’d feel great.

At home, my sense of immediate accomplishment is non-existent.  Yes, I know I’m raising three incredible boys.  All this hard work will pay off many many years from now, when they become great citizens of the world.  But right now, there’s no instant feedback loop for me.  I do a load of laundry, there’s four more right behind it.  I clean one room, there’s five more that need attention.  I pick up 50 Hot Wheels cars, and in 10 minutes I’m stepping on them again.  I cook one meal, and there’s four people complaining about it.

But with Angry Birds?  I knock down those towers and crush those pigs.  I get a “yippee!” from the remaining birds, three bright yellow stars, and sometimes if I’m lucky, a new high score.  And a new level unlocks with a new challenge, and I do it all over again. (more…)

I’m having a hard time figuring out how to start this post.

Probably because my emotions are all over the place.  Today is the last Friday of preschool, and I’m just back from our final monthly parent meeting at the school.

Next stop, kindergarten.

There’s no question that Howie’s ready.  We went over his last preschool progress report and reviewed all his goals and objectives.  He’s where he needs to be.  His teachers have created a fantastic transition plan for him, and the staff at the elementary school is well aware of his challenges and his strengths.  They are ready for us to be there.

But I’m not ready to leave this school.

This is the school where it all started for us.  The school that took us in when things were going so wrong.  The place where we realized that we needed to get Howie evaluated and get him services.  The staff that held my hand every step of the way during all those evaluations.  The people who introduced me to the words “social story” and “applied behavior analysis” and “sensory diet”.  The teachers who became partners in ensuring Howie’s success.

We were at a breaking point when we started two and a half years ago.  Things could have gone so badly.  But instead…

Everything has gone so right.

Clearly, I fear change.  I’m not afraid to admit it.  And it’s not that the new school is bad.  In fact, it’s wonderful.  My oldest goes there now.  I know it will all be okay.

But I’m so comfortable in my preschool bubble.  I know who to call when I need help.  They know me and understand me.

In our meeting today, Howie’s teacher reminded me that “change is growth”.  She was talking about Howie, of course, but she was speaking to me as well.

When Howie started at the school, he looked like this:

first day of school

And now he looks like this:

end of preschool

My friends and I joke that we’re in a constant state of being proud and scared with our kids.  With every accomplishment they have, it leads to the next stage of challenges and hurdles.  I’m so proud and amazed by all that he has done in these few short years.  I’m also scared out of my mind about what comes next.

I’m preparing myself with my timers and my visual schedule.  Just don’t be surprised to see me having a meltdown on the driveway come August 30th.

Closing time
Time for you to go out to the places you will be from
Closing time
This room won’t be open til’ your brothers or your sisters come
So gather up your jackets
Move it to the exits
I hope you have found a friend
Closing time
Every new beginning comes from some other beginning’s end.” – Closing Time by Semisonic

“Mom!  I can smell the wind!”

It was a Saturday afternoon and I was off to get my hair cut.  I needed one desperately – it had been about 5 months since my last one, and it was clearly way overdue.  It was a perfect warm sunny day.

And at the last minute, I decided to take Howie with me.

He climbed into the car and settled into his seat.  I buckled him in and told him where we were going.  No preparation ahead of time.  I slid the van door closed and got into my seat.

“Mom, can you roll down the windows?”

I was surprised by this request, to say the least.  My sensory seeker becomes a sensory avoider when it comes to wind.  He has always hated having the windows open in the car, ever since he was a baby.  He doesn’t like the feel of the wind on his face, or the noise that the air makes as it rushes through the car.  He hates any loud noise, really, except when he’s the one making it.

I’m the opposite.  One of my favorite things ab0ut spring and summer was the windows down in the car.  The feeling of the wind flowing past me calms me while I drive.  The noise is comforting.  And for 5 summers, I’ve missed it.  Windows have been kept up and the air conditioning on around my kid.

Until today.

I rolled down the windows halfway on both sides and pulled out of the driveway.

“Roll them down more.  All the way.  Make them match.”

I obliged, and we were on our way.

We live about ten minutes from the highway entrance, so for the first part of the ride we were traveling about 35 miles an hour.  Every once in a while I’d check in to see how he was doing.

“Too windy?”, I’d ask.

“No!”, came the response each time.  His hands bobbed up and down in the wind as it flowed past him.

Then the request : “Can you turn the music on?”

This too has been something I’ve missed.  I love listening to music in the car – my music.  But for so long the radio has taken a back seat to the kids’ movies, or nothing at all. Usually when Howie asks for “music” he means Sheryl Crow’s “Soak Up the Sun” over and over again.  And again.

This time, I turned on the radio.  “How’s this?” I asked.

“Fantastic.”

He was quiet as he listened to the different songs come on over the speakers.  Occasionally, he would ask what a word meant from a song or tell me that “this song is all about fireworks!” (thank you Katy Perry).  But for the most part, he just sat back and…relaxed.

We turned on to the entrance ramp for the highway and I started to roll up the windows.  I explained that we were going to be going really fast and that it would get very noisy and windy in the car.

Howie protested.  “No!  Leave them open!”

So I did.

I hit the highway at 50 miles an hour.  Then 55…then 60.

It got noisier and noisier in the car.  Howie was still smiling.

65 miles an hour.  Then 70.  Still no complaining.

I turned the radio up as I approached 75 miles an hour.  “Learn to Fly” by the Foo Fighters came over the speakers.

“MOM!” Howie yelled from the back of the car.  “I can smell the wind!”

We arrived at my hair cut right on time.  For the 20 minutes it took to wash and cut my hair, Howie sat perfectly right next to me with my iPad, intent on beating my high score.  Amidst all the noises and smells in the salon, he focused on his game.  As we were leaving the receptionist said he was the best behaved boy they had seen in there in while.

The windows were open again on the ride home, and we were able to proudly announce to Dad that we made “green choices” for the whole trip.

**********

Sometimes I get so stuck in our ways that I forget to push the envelope a little.  I worry that if we don’t drive to school on a certain road, or eat pizza from a particular place, or run out of green straws, the whole world will fall apart.  It’s easy to do the things we always do, even if it’s meant giving up something that I enjoy.

Like having the windows down.

It just took one time to try it.  Now the windows are down every single time we’ve been out since then.

And together, my son and I can smell the wind.

Fly along with me, I can’t quite make it alone
Try and make this life my own (and)
Fly along with me, I can’t quite make it alone
Try and make this life my own. . .

I’m looking to the sky to save me
Looking for a sign of life
Looking for something to help me burn out bright
I’m looking for a complication
Looking cause I’m tired of trying
Make my way back home when I learn to. . .fly” – Learn to Fly by the Foo Fighters

Three stories.  One theme.

**********

It’s the end of year show for Howie’s preschool.  We make it through the show without incident.  Outside the classroom is the giant food table, where each kid brought in a snack matching a letter of the alphabet.  Our eyes travel over the table, looking for something that he can eat.  His corn intolerance can make these events, well, intolerable.

One of the moms who volunteers in the class comes up to us.  “I bought some Italian Ices at the store for Howie.  I looked everywhere for something that he could eat.  There’s no corn in it at all.  I wanted to make sure he had something special here.”

I had held it together pretty well during the show, but my eyes welled up a little here.

**********

It’s Memorial Day, and we’re at our friend’s house for an afternoon BBQ.  It’s about 90 degrees out, and we’ve been in and out of their pool and trampoline for hours.  It’s three families spending the afternoon together – six adults and seven kids.  No one bats an eye when Howie has a meltdown about the bugs and needs to sit.  He’s tickled, fed and included every moment of the day.  The kids all play together easily, moving from one activity to the next.  When it’s time to go, Howie screams and begs for more time.  My friends help me gather our stuff and we make a quick exit.  Later, I e-mail them thanking them for treating Howie like Howie.  I thank them for raising their kids to be tolerant and understanding, because we all know it’s not always like that.  I tell them that other kids are already noticing that Howie is different, but their kids don’t see anything but a regular 5 year old boy.

**********

Yesterday afternoon, the phone rings.  It’s my friend (from the story above) and she’s calling to give me a heads up about her son’s 5th birthday party.  Her oldest and my oldest are best friends. Howie and her youngest are best buds too.  They are having the party at Pump It Up, a large indoor bounce house playspace.  She wants to know if there’s anything she can do to make the place more “sensory friendly” for Howie.  “It gets really loud in there with the music.  I can’t do anything about the sound of all the blowers, but I can ask them to turn down the music if you think it would be too much.”  As she’s talking to me, Howie is in the midst of a giant meltdown at my feet.  He’s screaming at me to get off the phone and just help him.  My eyes well up again.

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Three stories.  One theme.  I write a lot about having a “village” – friends with kids with special needs who “get it“.  They walk in my shoes every day and they understand the pain and frustration and heartache without explanation.

But the friends in each of three stories all have “typical” kids.  They don’t walk in my shoes.  They don’t have to understand.

But they do.  The mom didn’t have to think of MY kid when she was shopping for treats for the school party.  There are 17 other kids in that class, including her own, yet she was concerned about my kid having something to eat.  My friends could have made snide remarks about my son at the BBQ, but instead they went out of their way to help us feel comfortable at their house.  My friend didn’t have to think about MY son at all when planning her kid’s birthday party.  But she was willing to make accommodations for him  so that he could enjoy the celebration.

They aren’t put off by the labels that surround my kid.  They just see my kid.

shaving cream

And for that, they are part of my village too.

“Oh, the more we get together,
Together, together,
Oh, the more we get together,
The happier we’ll be.

For your friends are my friends,
And my friends are your friends.
Oh, the more we get together,
The happier we’ll be! ” – The More We Get Together (children’s song)

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