July 2011


What am I missing?

I’m sitting outside of the preschool watching the playground.  It’s the second day of “Circle Time Camp”, the camp for all the kids attending preschool for the first time in the fall.  I’m watching Lewis.  He’s running around the yard, going up the ladder and down the slide, reaching his hands up high to hang from the monkey bars.  When camp is over, he follows the other kids to the bench and waits for his name to be called to go home.  He sits with his hands in his lap, nicely waiting his turn.

What can’t I see?

On Monday, I’ll be taking him for his developmental evaluation at a hospital in Boston.  It’s the appointment that I canceled back in March, when my gut was telling me that there was nothing wrong.  It’s the appointment that I rescheduled after his early intervention speech pathologist suggested that he needed to be evaluated.  He’ll be seen by a developmental pediatrician and a speech/language specialist.  I’ve filled out all the forms and arranged for child care for the other boys.  We’re actually going this time.

But I don’t want to go.  I don’t want to hear what they have to say.  I don’t even know what to say to them.

I have watched him carefully since I made the appointment, looking for red flags or something that makes me feel like the appointment isn’t a waste of time.  He has a speech delay.  That I know.  I’m watching his eye contact, his pretend play, his transitions.  I asked those who know him to tell me honestly what they see.

They see my little guy.  Nothing else.

When we did this with Howie, I knew there was something wrong.  Something “off”.  I expected a PDD-NOS diagnosis.  This time…what is it?

This appointment is making me question everything I know as a parent.  He was my surprise baby.  I have watched him like a hawk since day one.  Checking off the milestones on the list, including all the ones his brother missed.  He’s my eater.  My sleeper.

My buddy.

“Mom?  How come all the other little kids at the family reunion could say their G sounds better than Lewis?  Is it because Howie doesn’t use his right words and he’s copying him?  Or is there something wrong with Lewis too?”  My oldest’s words swirl around my head.

I’m not only challenged with figuring out if his behavior is that of a typical 2 1/2 year old or if there’s something developmental different about him.  I’m also challenged with determining if it’s learned behavior from his big brother.

I’m the one who called Early Intervention three times to come out.  I’m the one who knew that he wasn’t talking like he was “supposed to”.  How could I be missing seeing something else?  How many more labels will be added to the end of this child’s name?

I know the labels don’t change him.  I have said it a million times to friends, family and other parents across the internet.  The label does not make him anything else but who he is.  All it does is get us the help he needs.  That we need.

It’s easy to say.  Not easy to remember.

It won’t matter what they tell me.  I’m going in with an amazing, smart, funny little two year old and I’ll be coming home with the same kid.

It does matter.  It matters a lot.  I don’t want to do this again.  I am not sure I can do this again.

I have to do it again.  For him.

We have to know.  And then, move on.

“If you put your trust in me I’ll make bright your day.
Look into these eyes now, tell me what you see.
Don’t you realise now, what you see is me.
Tell me what you see.
Listen to me one more time, how can I get through?
Can’t you try to see that I’m trying to get to you?
Open up your eyes now, tell me what you see.
It is no suprise now, what you see is me.
Tell me what you see.” – Tell Me What You See by The Beatles

I only wanted my sons to go to college.  I wanted them to have the opportunities that I didn’t have.  That’s all I asked for.

-my 89 year old grandmother, July 23 2011

I’ll be honest.  When I saw the e-mail announcement about my family’s reunion, I wasn’t going to go.

The reunion tradition on my dad’s side goes back to the early 1970s.  My dad was the middle child of five brothers and we would get together every three years somewhere across the globe for a week.  Sometimes it was close to home in New York, other times farther away.  But it was a standing tradition.  We would swim in pools or the ocean together, visit cities and tourist attractions together, and of course, eat together.  A lot.    I always looked forward to these reunions as many of my cousins lived far away and it was the only time we’d get to see them.

As I got older, I began to see how unusual these reunions were.  Our family is closer than most.  I grew up living next door to two of my dad’s brothers and their families, and their children were more like siblings to me than cousins.  My friends jokingly referred to our houses as “the compound”, in a reference to the Kennedy compound on Cape Cod (but without the estates.  And the scandals).  When I moved to Boston, I moved into my cousin’s apartment.  “I don’t even like my cousins,” a college friend told me, “let alone like them enough to live with them.”  But this was my “normal”.  This was how I was brought up.  We weren’t just family.  We were friends.

This reunion, though, was going to be different.  Our first one since 1996.  My first one with my kids.  My first one without my dad.

I wasn’t sure I could handle either of those two things.

But as the reunion attendee list expanded, I knew I had to be there.  We had family coming from as far away as Brazil and Germany.  My cousins were bringing their babies that I had never met.  My brother and sister-in-law were going to be there, along with my mother and sister.  And once I knew my 89 year old grandmother was making the trip, I sent in my RSVP for yes.

Because this wasn’t about me anymore.  This was about family.

Surrounded by family everywhere. Feeling like the old days. Swimming, laughing, eating in 110 degree heat. Feeling nothing but love.

-my Facebook status July 22, 2011

From the moment we got there, it felt like old times. It was an extended family reunion with not just my first cousins but with my dad’s cousins as well. The 13 great grandchildren ranged in age from 10 months old to 9 years old.  They ran up and down the corridors of the reception room playing tag and racing each other.  They laughed at each other’s silly faces and played games on the floor.

And where else but at a family reunion could my 23 year old cousin make swords out of balloons for my three kids so my boys could “fight” each other?  And then join in himself?

This is what I remembered.  The joy and ease of just being together.  Like family should be.

And my kids?  Amazed me.

I’m guessing that at least half of the relatives there know about my son and his autism.  Maybe more.  But not one singled him out for anything.  When he took to the floor of the reception room with his Hot Wheels cars and drove them along the pattern of the rug (which looked remarkably like a road), no one batted an eye.  As he wound his way under tables and under feet, aunts and uncles and cousins just let him pass by, sometimes even joining in behind him.  They let him be…whatever he needed to be.

There was no sensory overload for him.  Everyone understood what he could and couldn’t eat and do.  There was no pressure for us to be part of the group, which made being part of the group much easier.  His only meltdown was at 9pm our last night there when he realized we were going home the next day.

I learned a few things that weekend about my family.  First, they don’t just “talk the talk” when it comes to tolerance, acceptance and understanding.  They walk the walk.  There were no disapproving looks, no whispering behind backs.  Just concern and genuine care for one another.

Secondly, I actually like these people.  I don’t like them because they are family but because they are good, decent, and fun.  I want to spend time with them.  Like my kids, I wasn’t ready for the weekend to end.

And finally, being with my family felt like home.  It was a comfort that I had been missing for a long time.  Since 1996.

I’m not going to lie and say that there weren’t times that I felt something was missing.  I watched my four uncles talk together, and I would remember back to when there were five.  The funny pranks felt like there was one jokester too few, the laughs didn’t go on quite as long.  There was one less sarcastic voice in the mix.  But in many ways, I felt my dad there with us that weekend.  My uncles each have traits that remind me of him.

And my kids?  Every day they show some part of my dad’s soul.  This weekend, they showed me how important being part of a family is.

On the way home, I thought a lot about my grandmother’s quote from the weekend.  “I only wanted my sons to go to college.  I wanted them to have the opportunities that I didn’t have.  That’s all I asked for.”  As a parent, I understand that completely, of course.  We all want our kids to have what we didn’t and couldn’t have in life.

But in this instance, I wanted my kids to have the opportunities that I did have. I want them to know their cousins and spend time with them.  I want them to feel like a part of something special, something unusual.  I want them to know that no matter how hard things are, their family will always be there for them.

They got that this weekend. And hopefully, for more weekends to come.

My oldest with my 89 year old grandmother. Hearing about life before iPads.

We are a family like a giant tree branching out towards the sky,we are a family we are so much more than just you and I we are a family like a giant tree,
growing stronger, growing wiser, we are growing free… we need you… we are a family…” – Family from the Dreamgirls Soundtrack

“Spreading awareness at swim lessons.  Move along.  Nothing to see here.” - my message to some friends

“Spread awareness at the public library.  And at the baseball clinic today.” – my friend wrote back

Sometimes I don’t see it.

It is so part of our every day, woven into every minute of every activity we do.  And we “manage” it, using the language and strategies and skills we’ve been given by our son’s teachers and therapists.

It’s not until I watch my son through someone else’s eyes that I see it so clearly.

It was all right there at swim lessons.

We’ve had two sessions so far.  Saturday was our third.  Walking in, I noticed our usual instructor wasn’t there.  Before our sessions started, I had informed them at the front desk that Howie had autism and that there were going to be parts of the lessons that would be challenging for him, but our goal was to get him comfortable in the water and have a good experience so he’d return to learn more.  It’s why we were paying the big bucks for the private one-on-one lessons.

Seeing the new teacher, I went up to her while Howie was taking off his shoes on the bench.  She looked all of sixteen.  Maybe eighteen.

“Hi, nice to meet you.  Just wanted to let you know that Howie has autism, so he might have a hard time in the pool.  I’ll be happy if he’s just in the pool.  You can remind him that he’s earning something from the vending machine.”

She looked at me and said “Okay.”

Um, yeah.

Those words mean a whole lot to me, and to others who work with kids with autism.  To a eighteen year old substitute swim instructor?

I’ll give her credit for trying.

She coaxed Howie into the pool but couldn’t get him to sit down.  For ten minutes of a 30 minute lesson, they worked on sitting down.  She had the toy fish sit down.  He picked it up and squirted water in her face.  She took that away and tried something else.  He responded with nonsense babbling and stuck his tongue out at her.

I walked over and tapped his shoulder. “Remember, you’re earning.  You need to make green choices.”

He sat.

The instructor tried to get him to put his face in the water to blow bubbles.  He blew at the water but not in it.  She took the fish out again and had the fish blow bubbles.  Again, he grabbed the fish and squirted her in the face.

She asked him to sit on the “safety step” – the second step into the shallow end.  He refused.  I could see the lifeguard getting agitated.  I could see the instructor’s confusion knowing that he’s had two lessons already and he wasn’t past the safety step.

I closed my eyes for just a moment.  I opened them and looked over at Gerry, having his lesson on the other side of the pool.  Floating, kicking, swimming.  Quietly.  Easily.

Twenty minutes into the lesson, she got Howie in the pool.  I watched her try to get him to kick his feet and “ice cream scoop” his hands.  He got silly.  At this same point in the lesson last week, something about his hands being ice cream scoops made him laugh.  And once again, here we were.

She had him crawl like a spider along the wall and climb out.  The lesson was over.

Howie was shivering like he had just been swimming in the Arctic.  He had to pee.

As we walked over to the changing rooms, I saw the instructor and the lifeguard share a look.  I know that look.  It wasn’t a mean look.  More of a “that was a hard one” look.

I get it. And it’s important for me to be reminded of it.

At our last appointment with our developmental pediatrician, she said that our long term goal was for Howie to be able to walk down the street and for no one to know that he has autism.  I’m not sure that should be our goal.  The autism – the quirks and challenges that he has – are part of him.

Would I like to have those challenges not be there?  Of course.  Will we do whatever it takes to help him learn life skills and coping strategies to make his life easier?  Absolutely.

But it’s also my job to help the world understand him.  That he’s not being a brat or just a difficult kid, but that he’s processing the world around him differently.  I have to say more than just “he has autism“.  I can’t expect that to mean anything more than a word to an eighteen year old who has never worked with special needs kids.

We’re spreading awareness at swim lessons and everywhere else we go.  But don’t move along.  Take a moment to look and understand.

If someone knows the name of this stroke, please let me know.

Listening to you, I get the music
Gazing at you, I get the heat
Following you, I climb the mountain
I get excitement at your feet

Right behind you, I see the millions
On you, I see the glory
From you, I get opinion
From you, I get the story” – See Me, Feel Me by The Who

The commercial before the PBS show “Curious George” tells us to “Read with your child 30 minutes a day and inspire a love of learning that will last a lifetime.”

But what happens when your child shows no interest?

I’m stressing about that over at Hopeful Parents today, since it’s the 17th of the month.

Hopefully Levar Burton’s song won’t be stuck in your head all day like it is mine.

Hopeful Parents Website Image

Click HERE for “Reading Rainbow

 

I remember that night like it was yesterday.

February, 2008.  I’m with Howie.  He’s just a few weeks shy of two years old.  We’re at Children’s Hospital.  It’s 8 o’clock at night.

He’s being very good as they attach about 20 wires to his head.  His eyes are fixated on “Curious George” on the small TV hanging from the ceiling.  He starts to squirm a bit – the smell of the glue is starting to get to him.  I hold him tighter, telling him it’s almost time for sleep.

We’re there for an overnight sleep study.  At almost two, he still had never slept through the night.  Not once.  And he wouldn’t sleep alone.  After a year of trying everything possible to get him to sleep, we’re at the hospital to make sure there’s nothing else going on.

I’m told to hold him in the bed until he’s drifted off.  The technician would whisper into the speaker when it was okay for me to move to my tiny bed across the room.  We would do this dance 5 times during the night.  It was the worst sleep of my life.

The results showed “abnormal brain blips”, so we returned a few weeks later to get fitted for a 24 hour EEG.  I was six weeks pregnant with Lewis and beyond exhausted.  I held my newly minted two year old down as once again wires were attached to his head.  This time, he screamed.  We had to restrain him.

Two weeks later, I sat in the presiding doctor’s office.  He described the abnormal brain blips as “benign rolandic epilepsy”.  He told me to watch Howie when he drifted off to sleep, particularly if it happened in the car.  Then he told me it was nothing to worry about, and if we didn’t see a seizure by the time he was 11 or 12, then he would be fine.

Oh, and by the way, it has nothing to do with why he won’t sleep, he said.  Just leave him in his crib to cry.  If he throws up, clean it up and put him back.  He handed me a sheet on how to change his sleep behaviors.  To undo what we had been doing wrong.

I remember it all like it was yesterday.  His words still make me want to throw up.

To this day, Howie does not sleep consistently.

But now I know better.  At the time of our sleep study, we didn’t have an autism diagnosis or even a sensory processing disorder diagnosis.  We had nothing but my anecdotal data and the belief that he woke up every time he peed in his diaper.  The knowledge that he had to be touching me when he slept.  The feeling that everyone judged me because my two year old slept in bed with me.

Now I know.  I know that this is not a behavior issue.  I can’t “sticker chart” him to stay in his bed all night.  Believe me, we’ve tried.  He comes in, we bring him back to his bed.  I stay until I think he’s asleep, then I wait five minutes more just to make sure.  An hour later, he’s back again.

Gerry and Lewis started off in our bed too.  Through behavior modification, they both returned to their beds.  And they sleep through the night.

I know this is something different for Howie.  The melatonin has made a huge difference – it no longer takes him hours to fall asleep and when he does wake up in the middle of the night he goes back to sleep fairly easily.  We’re not spending hours at 2am flipping through pictures of Story Land to calm him down.

I know that his diet plays a part.  When he eats something that bothers him, he’s up for nights in a row.

I know that sensory inputs are important.  He sleeps under weighted blankets and three other covers.  He’s in long sleeves pajamas in the dead of winter and the scorching heat of summer.  Our house is kept at a constant temperature at night no matter what the calendar says.  No windows open while we sleep.

I know that he needs to fall asleep with me there – his arm “tunneling” into my neck on one side and my arm tightly wrapped around him.  I’ve given up caring what the “experts” say about sleeping with your kid.  I need to do whatever gets us through the night unscathed.

But I can’t always predict the triggers that wake him.  And even when he doesn’t wake up…I do.  Expecting him to come in at any moment.

After 5 years of this, I don’t remember how to sleep anymore either.

His sleep issues aren’t just a problem for him.  It affects our whole family.  I can’t remember the last time I got eight hours of straight sleep. Tim and I can’t get away for a night just us.  We’re keeping our local Dunkin’ Donuts in business.

There are days when I’m beyond tired. And I’m tired of it.

Every family with a child on the spectrum has pieces of the puzzle that they want solved.  For us, our missing piece is sleep.

I just want that puzzle solved.

he's sleeping!

no...he isn't...

Whatever gets you through the night it’s alright, it’s alright
It’ your money or your life it’s alright, it’s alright
Don’t need a sword to cut thru flowers oh no, oh no
Whatever gets you thru your life it’s alright, it’s alright
Do it wrong or do it right it’s alright, it’s alright
Don’t need a watch to waste your time oh no, oh no” -
Whatever Gets You Through The Night by John Lennon


This post was written as part of the Best of the Best, Edition 8: Sleep Issues

He was stopped dead in his tracks.

“I’m not going in there, Momma!”

We were standing outside The Disney Store in the Mall.  It was 90 degrees outside and sticky.  A trip to the mall to ride on the carousel and the germy kiddie cars was all I could think of to get us through the heat of the day.  The mall isn’t close to us, so we don’t go that often.  This trip was supposed to be a fun adventure.

Thinking I was rewarding them for behaving in the mall, we stopped at The Disney Store to window shop.

“I’m not going in there, Momma!”.

Howie put the brakes on outside of the store.  He would not take one step across the line that divided the mall corridor from the all-things-Mickey overload.

Gerry was already in the store, about five feet from us.  He’s still conditioned to not be out of my sight in any store, even at nine years old.  Lewis was practically falling out of the stroller, trying to get to the Lightning McQueen display.

“Come on”, I said.  “It will be okay.  Look!  There’s Phineas and Ferb!”

“NO!  I’m not going in there.”  Panic came across his face.

Gerry turned to look at me, with eyes that said what is taking so long???  Lewis started to wriggle and squirm his way out of his buckles.

I looked right into Howie’s eyes.  They were fixated on the giant Mickey and Goofy suspended from the ceiling.  I turned my head to them and caught the reflection of the huge projection TV that was in the back of the room.  An ad for the next “Pirates of the Caribbean” was blaring from the speakers.

He was being bombarded from every direction.  Overwhelmed by sounds and sights.

I bent down and gave him a squeeze.  “It’s okay”, I said.  “You can do this.  I’ve got you.”

I picked him up and carried him into the store, pushing the stroller with my legs.

He buried his head into my shoulder.  His hands “tunneled” into my neck.  I squished my head into his hands and brought him over the threshold.

“Look at all the Cars 2 stuff.” I whispered into his ear.

He slowly turned his head and looked.

A few steps later at the Phineas and Ferb display, he slid down out of my arms.  I tickled him with a Perry the Platypus doll.  His infectious laugh filled the store.

A smile came over his face as a commercial for “Disney Junior” came on the big TV.  A familiar song, a familiar site.

And all was calm.

We spent fifteen minutes in the store.

Just long enough to buy a new Phineas and Ferb beach ball like his friend has.

Just long enough to overcome his fear.

Just long enough to know that he was okay despite his sensory overload.

My son went into The Disney Store.  For most kids, this is an easy stroll they take all the time.  For my kid, it was like climbing a mountain.  And at the top, the view was nothing short of breathtaking.

"Good work, Agent P."

(photo credit Wikipedia’s “perry the platypus” page. Yes, they have one)

Listen, baby, ain’t no mountain high
Ain’t no valley low, ain’t no river wide enough, baby
If you need me, call me, no matter where you are
No matter how far, don’t worry, baby
Just call my name, I’ll be there in a hurry
You don’t have to worry” – Ain’t No Mountain High Enough by Marvin Gaye

I’m writing this post from a Panera Bread cafe.

I’m using their free wi-fi, drinking a cup of coffee.  One empty plate sits next to me.  It used to hold an egg and cheese sandwich.

I’m alone.  For the first time in almost three years, it’s 10am and I’m completely alone.

Gerry is at baseball camp.  Howie is at his extended school year summer program.

And my little two-and-a-half year old Lewis?  He’s at his first early intervention drop-off playgroup.

He qualified for it because he’s now receiving home speech services.  It’s the first time I’ve ever left him…anywhere.

Last night I sent some friends a message on Facebook:

So Lewis starts his first EI drop off group tomorrow. On one hand, this will be the first alone time I’ve had in 2 1/2 years. On the other hand, I really wish he wasn’t eligible to go to an EI drop off group.

My friends had the best responses (of course):

Totally hear you. But he’s getting what he needs. That’s a really, really good thing.

And:

He is getting what he needs and you can take a moment to breathe. Xo

And:

Big picture- he is getting what he needs and that alone is awesome. Bigger picture- YOU GET TIME ALONE!!!! Now hear me, woman…listen good. Do NOT use that time to clean a damn thing. Get yourself a good book- FICTION or something else that interests you that is NOT about {autismspecialneedssensory​processingdisorderearlyint​erventiontherapy} or anything like that. Take said book and get thyself to a Starbucks or a favorite cafe or lunch spot and – wait for it- LEISURELY sip a beverage of choice

And:

Go get a pedicure during your alone time. Oh, wait….

(that’s from a friend who really knows how much I hate people touching my feet…)

So here I am.  My kids are doing they things they need to do.  Playing ball outside, making marshmallow men at summer school, and…playing with kids their own age.

And I’m getting what I need too.  Time to write.  Time to drink my coffee before it goes cold.  Perhaps even time to go to the bathroom alone.

Time for…me.

90 more minutes.  Excuse me while I go refill my cup.

off to playgroup

"Play with kids?"

I drink alone, yeah
With nobody else
I drink alone, yeah
With nobody else
You know when I drink alone
I prefer to be by myself” – I Drink Alone by George Thorogood

What if, instead of thinking about what could go wrong, we thought about what could go RIGHT? – Sensory Planet’s Facebook status, June 20th

I had been dreading this week for a long time.

We had two weeks off between the end of the school year and the beginning of our summer school program.  The first week I knew we were going to fill with our Story Land trip.  But the second week?  Plan-less.

Cue panic.

Three boys home.  Three boys who were not used to spending this much time together.  Three boys with nothing to do but crash into each other.

I had low expectations for how the week was going to go.  Scratch that.  I had NO expectations.  I knew we could go to Target only so many times.

But then…

Monday: I’m sitting at the computer.  7:30am.  Two out of three boys are up already.  We’ve already watched two Nick Jr. shows.

My instant message lights up.  It’s my friend, Howie’s aide from this past year.  She asks what our plans are for the day.  I respond with “I have no idea how I’m going to fill up all these hours.”

A pause in the messaging.  And then…”Want to go to the beach?  StreetSweeperMom* is going with her two boys too.  We’re leaving in an hour.”

I come up with every excuse.  We haven’t been to the beach in two years.  My kids hate sand.  I’ve never been without Tim.  We’re not “beach people”.

Well, apparently, we are now.

beach1

My kids TOUCHING sand. Yeah, take that sensory issues.

beach2

No beach shoes. First time in 9 years.

This day was life changing.  I got kicked out of my comfort zone by my friends.  And my kids…surprised the heck out of me.

*StreetSweeperMom is not her real name.  Of course.

Tuesday:  8:30am.  The phone rings.  It’s the mom of one of the kids from Howie’s preschool class.  She’s taking her son to the playground after his tennis lesson, and she wants to know if we want to meet them there around 10am.

My first instinct is to say no.  I hate the playground.  I hate the constant comparison that I do with my boys and the other kids.  I hate the fact that I feel like the only one who “hovers” over my kids on the equipment.  I hate that I’m the one disciplining other kids while their moms sit on the bench talking on the phone. It’s just one of those places that brings back every bad feeling.

But somehow the words “Sure!” came out of my mouth.

Howie was so happy to see his friend.  They spent an hour chasing each other around.  I spent an hour bribing Gerry to stay at the park in the heat.  Cost me a Captain America Coolatta from Dunkin’ Donuts, but he stayed.

At 11am, I was finished at the playground as well.  I started to give my 5 minute warnings to the boys.

“Do you want to leave Howie here with me?  I’ll bring him home at lunch time.”

It’s Howie’s friend’s mom.  My jaw dropped.  A string of “are you sure?” and “they could be a handful together” and “I’ve never left him here before”s came out of my mouth.

“We’ll be fine.  I’m familiar with all this.”

by “all this” she means the autism.  Her son’s on the spectrum as well.

So I leave him.

playground

fossils at the playground...of course.

At noon, they’re back at our house.  “He was perfect,” the mom said.

That afternoon, we went swimming at our friend’s house.  My first time taking the boys in the pool without Tim.

Wednesday/Thursday: I chose to let the kids decide when we left the house instead of arguing with them about going out.  If it meant not getting dressed until 11am, so be it.  We even took a detour to the craft store before the supermarket, breaking my “only one stop” rule.  We survived.

I’m choosing to ignore the “Mom, I’ve been dealing with this since he was four.  I’m done.” comment that Gerry made in the car when Howie’s verbal stims got really loud.   Instead, I’m focusing on the fact that earlier that morning, they built a Hot Wheels track together without me.

I’m also choosing to ignore the appointment we had with Lewis at the ENT specialist.  He was there for another hearing test.  The doctor said he couldn’t even see in his ears.  “It’s like he has a hard crayon in there.”  Instead, I’m focusing on the moment that night when he told me “I LOVE spaghetti.”

How do you eat sesame noodles?

Friday:  2pm.  The phone rings.  It’s one of Gerry’s friends, returning his call from the morning for a playdate.  His mom gets on the phone and proposes a child “switch”.  Her youngest is one of Howie’s best buddies.  She’ll take the 5 year olds, I’ll take the two 9 year olds and the 2 year old.

I take a deep breath.  Howie has never been on a solo playdate.  Ever.  I’ve left him for 20-30 minutes or so when I’ve run out in the middle of a get together, but never an actual “no parent” playdate.

I say “Okay!  Sounds great!”

I send Howie off at 3pm.  Tim’s set to pick him up in an hour or so.

Two hours pass before they come home.  They were playing so well, Tim stayed.

Goldfish and They Might Be Giants

That night, after the kids are in bed, I go over to StreetSweeperMom’s* house for drinks.  Five of my friends are there.  We met because we’re all autism moms, but we’re now bonded by so much more.  After several glasses of Skinny Girl and many mint chocolate brownies, I share my nerves about traveling to a family reunion alone with the boys.

My friend tells me “Howie’s come a long way.  I’ve seen him change, just these few weeks alone.  You’ll be fine.”

*StreetSweeperMom is still not her real name.

Saturday: 6:30 am.  Howie’s up and I told him we were having our first swim lesson of the summer.  “I can’t wait to show her how I can swim with my vest on!”  I explain that swim lessons are without a vest.

Cue two hours of meltdowns.  I haven’t seen this in a long time.  I’m beginning to wonder if my friend was completely wrong.

Those swim lessons are a post all on their own.  But he did jump in the water, which was more than I can say happened all of last year.

Big jump!

The rest of the day was unsettled.  We paid big time for the 30 minutes of swimming.

Sunday:  8pm.  We had just told Howie he couldn’t go to the fireworks.  The day was one constant “red choice” after another.  I sat him down and quietly explained that his engine was running too high to go to the fireworks.

He could have completely fallen apart.  Instead, he sat quietly for 30 minutes in his green chair.  “I’m making green choices now”, he said at 8:30pm.

So off we all went.  My first fireworks in five years.  Our first time as a family.

(it was dark so I don’t have any pictures.  But it was awesome.  Five of us in the back of the truck.  One kid in headphones saved the day.)

Monday: 10:30am.  The highs of the week are becoming a distant memory.  Just like the fireworks themselves, the whole family is beginning to fade.  An attempt at a family breakfast out fizzles.  We spend the morning at a friend’s house with their water slide.  The boys hold it together there, despite the grouchy faces caused by lack of sleep and a week’s full of tolerance.

mr. surly

Who are you calling grouchy?

mr pool

Good luck getting me out of here...

eyesquint

Anyone have a towel?

Today: 9am.  Two boys at camp.  One two year old walking around like he owns the place again.

This week that I had been dreading was now just a memory. I had expected these eight days to go badly.  Now photos and seashells remind us of the week that our world expanded beyond our little house.

We just needed something to set us on fire.  I wonder what comfort zone we’ll crash through next time?

Do you ever feel like a plastic bag
Drifting through the wind, wanting to start again?
Do you ever feel, feel so paper thin
Like a house of cards, one blow from caving in?

Do you ever feel already buried deep?
Six feet under screams but no one seems to hear a thing
Do you know that there’s still a chance for you
‘Cause there’s a spark in you?

You just gotta ignite the light and let it shine
Just own the night like the 4th of July

‘Cause baby, you’re a firework
Come on, show ‘em what you’re worth
Make ‘em go, oh
As you shoot across the sky” – Firework by Katy Perry

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