I knew from the moment his head peeked around the bus seat that he had had a rough day.

When Howie’s upset, his whole face scrunches up into a giant frown.  He would have the worst poker face.

My own face must have given me away when I looked at the bus monitor.

“Yes,” she said.  “He is very grumpy about something from school.  But he held it together on the bus.  Told me with his words that he didn’t want me to talk to him or sit with him.  He just sat there.”

I grabbed Howie’s hand and walked him off the stairs.

We stomped together down the driveway.  I asked if he wanted to talk about it.

“NO!”

“Do you want to go in?”

“NO!”

It was 95 degrees outside and 99% humidity.  Howie started pacing in the garage.

I sat.

“What are you doing?” I asked.

“I’M THINKING!”

Finally it comes out. “I had to finish a worksheet at camp before I came home but I had already done it in school before and I didn’t want to do it and they made me.”

“Did you tell them that?”

“NO! I JUST IGNORED THEM!”

He paced some more.

Somehow, I convinced him to come inside.  More stomping.

He sat down in his beloved green chair.  His face was still frowning.

From the other room, we could hear Lewis working with his home ABA therapist.  They were playing a game, talking quietly.

Howie looked at me.  He wiped away a tear.

Leaning over, he whispered in my ear.

“I’m going to go in there and put on a happy face.  Even though I’m not.”

I was stunned.

“Oh…okay.” I stuttered back.

And he did.

I followed him into the room.  He looked at Lewis’ therapist, gave her a big smile, and said “Hi!”

“Hi Howie!  How was your day?”

“Good!”

She looked at him.  “You look happy.  Are you happy?”

“Yes,” he said.  “I am.”

He turned to me.

Gave me a little smile.

He turned back to them.  “Can I play the game too?”

“Of course!”

Wiping away a tear myself, I sat down.

The three of them played the game.  Incident free.

Howie sat on my lap when the game was over.

I whispered in his ear.

“I’m very proud of you.”

“I did it,” he whispered back. “I fooled them.”

Maybe I will take him with me to Vegas after all.

Can’t read my, can’t read my
No he can’t read my poker face
(She’s got to love nobody)
Can’t read my, can’t read my
No he can’t read my poker face
(She’s got to love nobody)” – Poker Face by Lady Gaga

“I took the kids to a barnyard and creamery. The goats are humping each other and there’s a bunny that is definitely not alive.  And we got rear ended on the way here.  Has school started yet?” – my text to a friend yesterday morning.

It has been a long hot week.

This was our first full week of summer vacation at home.  Last week we spent three days in the middle of the week at Our Happiest Place on Earth.  Not Disney, but Story Land in New Hampshire.  So this was my first week that I was full on in charge of the daily activities for three boys who either play together fabulously or throw Hot Wheels cars at each other.  There’s no in between.

So…yeah.  I’ve been pulling 18 hour days of being Julie McCoy.

I woke up on Tuesday thinking it was Friday.  That was bad wishful thinking.

There hasn’t been much in between with the weather too.  For two weeks straight it’s been either torrential rains or 95 degrees out.

Friday was one of those days.  It poured like crazy for two straight hours when we woke up and then turned blistering hot.  I needed to escape the house and chose a little creamery near us that had a barnyard.  They also had something called a “barnyard jump”, which looked like the bottom part of a bounce house.  Even showing my kids all of this, it still took us 45 minutes to get out of the house.

Herding cats is an understatement.

We got about six minutes from our house, and I slowed the car down because the car in front of me was taking a left.  I was at a complete stop when in my rear view mirror I see a small Toyota truck get closer and closer and…

BAM!

I pulled into the restaurant parking lot that was on the side of the road, and the 12 year old driving the truck got out, looking horrified.

(Yes, I’m sure she wasn’t 12.  But she looked it.  Because I’m that age now when anyone under twenty-five looks twelve.)

We exchanged info even though there wasn’t any visible damage to the car.  The kids were wide-eyed but okay.

We got to the creamery right as it opened and the sun was beating down.  As we piled out of the car, one of the girls working there walked by.

“Can you tell us where the barnyard bounce is?” I yelled across the parking lot.

“It’s down the hill but it’s not open.  It’s too wet from all the rain.”

Um…what?

“Do you think it will open this morning?” I yelled again, with a slight hint of desperation.

“I have no idea!” yelled the girl back.

Oh good.

I turned to the boys and tried to explain the situation.

“So, the big jumpy thing is wet from all the rain and it’s not open now.  I know it will be a disappointment if we can’t go on.  But let’s go look at the animals and hey…how about ice cream for lunch!”

That seemed to settle them for a bit and we checked out the barnyard.  On the hill below, more twelve-year-olds were walking around the big jumpy thing with giant hand dryers.

The barnyard had some cute baby chickens, some very loud grown-up chickens, goats, bunnies, alpacas, a pig and a cow.

The kids were most excited by a big dog that kept running by with a John Deere collar.  He ran up and down between the two fences separating us from the animals.

There was one very quiet bunny laying by its water dish.  At first, I thought he was just resting.  It was 90 degrees after all.  But then the dog ran by several hundred times and it didn’t move.  A closer inspection by me as the kids ran with the dog proved that the bunny wasn’t breathing.  The farmer (??) didn’t seem to notice and I didn’t want to upset the kids.

I was then distracted by the goats that started…um…climbing on top of each other.

“Time for ice cream for lunch!” I proclaimed.

That killed a good 30 minutes.  I’m sure Howie ate all sorts of forbidden corn syrup products in his ice cream and I knew I’d pay later, but at that moment I just didn’t care.

(note: I forgot my camera, so these pictures were taken on my incredibly old BlackBerry.  I only have space for 5 pictures to save on the phone so I delete the crummy ones along the way.  Yes, these were the best ones.)

“You can eat the bowl!”

We left when Howie tried to follow the model train into the employees only area as Lewis was yelling “Pay online! Save time!”

(another note: if anyone can tell me what that is from, I would greatly appreciate it.  So I can make sure he doesn’t watch it again.)

As I was about to tell the kids that we were going home, we noticed some kids jumping on the barnyard bounce.

So with bellies completely full of ice cream…away they went.

please don’t puke…please don’t puke….

“Get out of here bugs!! You don’t want us jumping on you!!”

Best $15 for 45 minutes I’ve spent in a long time.

(last note: I also forgot sunscreen which meant we couldn’t play on the mini-golf course that was “calling my name!” as Gerry put it.  I told them their dad would be upset if we golfed without him so we’d have to go back with him.  Sorry Tim.)

Howie insisted on saying goodbye to the animals before we left.  The definitely dead bunny was still there.

The goats were done with their…business. So they came over to say hello.

Once Lewis started taunting the goats with “Hey goat! Look at you stuck behind those two fences!”, it was time to go home.

But not before one last really bad picture. Someone is all done. Someone besides me that is…

On the way home, we drove by the spot where we were rear ended all those hours earlier.  Howie proclaimed “Hey!  That’s where that truck smashed into us!”

I am pretty sure we’ll hear that for the next 35 years.

We have ten more days before camp starts for Lewis and our Extended School Year program starts for Howie.

Until then, I’ll have my Julie McCoy hat on.  Look for me.  I’ll be the one herding the cats.

Ten more days. I can do it.

Hot summer streets
And the pavements are burning
I sit around
Trying to smile but
The air is so heavy and dry
Strange voices are saying
(What did they say)
Things I can’t understand
It’s too close for comfort
This heat has got
Right out of hand

It’s a cruel, (cruel), cruel summer
Leaving me here on my own
It’s a cruel, (it’s a cruel), cruel summer
Now you’re gone” – Cruel Summer by Bananarama

Thinking of all my friends in the Mid-Atlantic states hit hard by last night’s storm.  I hope you get your power back soon so you can read that I’m thinking about you 🙂

I’ve never done a “Wordless Wednesday” before.

But I couldn’t pass this up.

This picture left me speechless.

Last year, my son wouldn’t touch sand.  Kept shoes on.  No beach.

This year…

Behold…

Wait for it…

Who needs a weighted blanket?

He kept asking for more sand.  More decorations.

Look at his eyes.  Relaxed.

“It’s like a giant sandy hug.”

Thank you to my friends who got him into the sand and covered him up and scratched his nose.  If his knee wasn’t itchy, I think he’d still be there.

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

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

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)

A Letter to My Son’s New One-on-One Teachers:

Dear Mrs. L and Mrs. C,

First let me tell you how happy I am that you both are working with Howie this year. It gives me great comfort to know that the two of you are part of his team. This will be an important transition year for him, and I’m so glad that you’ll be a part of that.

Since this is the first time you’ve worked with Howie in this setting, I thought I’d give you some sense of where he is today since school ended in June. I figured it might be best to break it up into subjects and write about his strengths in those areas as well as where he might need some more guidance.

Language: Howie has come quite far over the summer with his use of language in general, and more specifically appropriate social language. He’s become much clearer in using his words to convey his thoughts and frustrations and has become quite a deep thinker (asking a LOT of “why” questions and is very curious about the world around him). He relies less on noises and babbling than he did before and is more interested in trying to get his point across. The echolalia has decreased quite a bit and he has a better handle on using words and phrases (and expressions) in the correct way.

With that comes new challenges for him. He still struggles with the appropriate tone and volume of his words, as well as the appropriate social language when playing with others or attempting to join in with others. He is still quick to get frustrated when things are exactly his way, or how he thinks things should be, so the need for perfection is still there. Howie will also “level up” or “level down” to his surroundings – meaning that if he’s around kids/adults speaking appropriately and acting appropriately, he will too. We saw that quite a bit this summer with his older brother. He was quite articulate when around Gerry. However, we saw the flip side with his younger brother Lewis. He would tend to imitate Lewis’ babbling and beginning vocabulary and think it was funny. We worked hard with Howie to encourage him to be Lewis’ teacher and teach him the right way to say words. We had limited success with that. I’m sure his social language skills group will help a lot in that area.

Self-care: Howie is completely toilet trained at this point, and now has the language to ask to go the bathroom and will tell you what he needs to do there. He is not adept yet at wiping himself up after pooping, so just be alert to that.

Academic: Howie ’s been practicing writing his name and can sound out some three letter words. He knows all his letters and letter sounds and can count at least to thirty (maybe higher). To see this from him, though, he needs to be in the “right” setting. If he’s overloaded or over stimulated or just silly, he won’t sit still long enough to show you.

Transitions: Transitions have definitely gotten easier for Howie, but he still has a very hard time moving from a preferred activity to a non-preferred one. We were actually able to move away from using the PECS schedule towards the end of the summer, but I think that’s because camp was in session. I’m guessing with school back we’ll be using it again at home.

Sensory: This remains Howie’s biggest obstacle by far. I firmly believe his sensory processing disorder drives his whole diagnosis and affects almost all aspects of his ability to function appropriately in a classroom setting. He gets easily over stimulated and overloaded, especially if there are many options to choose from and many things going on. I’ll give you two recent examples from the summer to help illustrate my point: one morning before camp, Howie fell into the toilet when he tried to sit down to poop. While he seemed to recover ok at the time, he was incredibly out of sorts for the whole day – clinging to me on the way out of the car, a ton of babbling and giant hugs on our way into camp, and then he had an incredibly hard day at camp. The sensation of falling, the feeling of his pajamas being wet, and the fear and anger than came with him falling in to the toilet did him in for the whole day.
Another example comes one night when he was in his room alone. He came running out of there screaming because he “was trying to read and the clock was TOO LOUD!!”. This is not a new clock, but because he was trying to concentrate on a book the ticking bothered him. We gave him some headphones and moved him onto his bed away from the clock and he calmed down and read his book.

Both examples were interesting to me because in one case (the toilet) he was so overwhelmed that he couldn’t tell me what was wrong until hours later but in the other case (the clock) he knew right away and could express it. We’re working hard on moving towards the latter, but sometimes just removing him from the situation and asking him what is going on (now that his language is better) is the key to understanding his difficult behavior.

One phrase you might hear from him quite a bit is “My bones made me do it”. Somehow in his mind he has separated out the idea that he doesn’t have control over his behavior, especially when it’s something he wasn’t supposed to do. We’ve tried to tell him that his brain tells his bones what to do, and his brain needs to tell his bones to make “green choices”, etc. Just wanted you to know what that means if/when you hear it from him.

More recently, he’s developed aversions to certain smells, so there’s a chance that someone’s lunch or snack may bother him if it’s next to him, but it’s mostly noises and movements and crowds that are his triggers. Eating his own food is still a struggle sometimes. I will try to pack a variety of things that I think might interest him, as well as some consistent choices so he doesn’t get upset. He likes his yogurt smoothies in a particular way, and I’m sure he’ll tell you how 🙂 There may be days when he eats it all, or days when he won’t eat a thing. I’m not worried about it as long as he tries to sit with everyone.

I’ll be sending a lot of this to the school OT as well. His biggest issue is still self-regulating, and he may need or ask for many squeezes and hugs, or many jumps on the trampoline to help get his body feeling better. We’ve seen this mostly after eating or after a tough transition.

I will do my best to let you know that morning if anything is already off with him (bad night sleep, more toilet mishaps, etc.) so you have a heads up for the day.

Overall I think Howie has grown a lot this summer. He’s become much more independent minded and interested in trying new things on his own. He’s developed quite a sense of humor as well and has a new love for learning that is just very cool. I’m hoping he’ll be able to show all that to you and more. He’s quite aware now of the log sheets that you fill out, since we go over them at the end of the day and he gets rewarded for making all “green choices”. I’m hoping he has many of those days with you.

Thank you again! I’m very excited for school to start.

Sincerely,
Alysia

As a note, a few books that might help understand Howie and his sensory issues more are “The Out-of-Sync Child” and “Sensational Kids”. They both really describe him perfectly. I have copies of both books and am happy to lend you them if you want.

You are my sunshine, my only sunshine
You make me happy when skies are gray
You’ll never know dear how much I love you
Please don’t take my sunshine away
.” – You Are My Sunshine by Bing Crosby

I’m not a big fan of what I call “obligation holidays”. I’m talking about days like Valentine’s Day, New Year’s Eve, and even my birthday. Holidays when you feel like you’re supposed to be doing something. Everyone asks what you’re doing on those days, and there’s the expectation that you need to do something great – a fabulous dinner, flowers, a midnight kiss. When it doesn’t happen, there’s a feeling of total failure. The end-of-the-day giant letdown.

Summer has always felt like one big long obligation holiday.

There’s the anticipation at the beginning of summer. Oh, we’re going to go on a trip, and go to the beach, and have cook-outs and family bike rides. This will be the year we finally take the boat out again, and…

(that last one is a tough one for me…the boat has been sitting in our garage for six years now. Tim and I used to talk about it every spring, thinking that maybe this will be the summer that we’ll rent a place on the lake for a week and spend the whole day out on the water like we used to do before…well, before everything. We don’t even mention it anymore. We both just stare at the boat in silence as we stack strollers and scooters and trash cans up against it.)

This summer I decided to break the cycle. I know our family better now. I know our limitations and have a better understanding of what we can and can’t do. I set zero expectations for this summer. And as I wrote back in June, I dug my heels in and started counting the days until September.

And now, Gerry starts school on Tuesday, and Howie the week after that. Gerry has a memory bag that his new teacher gave him on the last day of school, and he’s supposed to put special things in there from his summer adventures. I remember getting sad looking at it, knowing that I had nothing special planned, and just hoping we could find a thing or two so the bag wouldn’t be empty when he returned to school.

So here I sit now, the last Friday of August. I’m trying to figure out what we could put in that bag.

The truth is, quite a lot. Here’s what we did on our summer vacation:

-attended a wedding (my mom’s)
-went to Storyland
-went blueberry picking*
-went to the library
-played at the park (not once, not twice, but three times)*
-went bowling*
-went to the zoo*
-shopped at the mall
-went to the beach (just me, Gerry and Howie)
-took family walks
-taught Howie how to ride his bike
-played in the backyard
-went to the New England Aquarium
-saw a ballgame at Fenway Park (ok, this was just Tim and Gerry, but still cool)
-went to birthday parties (two of them – both Howie’s friends, first time ever)
-had playdates
-took all three boys swimming in friends’ pools (once even by myself!)
-survived camp/summer school/swim lessons (just barely)
-had a sleepover (Gerry’s first…more on this another time)
-bounced in a bounce house. All five of us together.

note: the (*) next to some of the activities on the list means I did them with the assistance of a mother’s helper. I hired the 15 year old daughter of Howie’s one-on-one aide to help me out two mornings a week on the days when Howie wasn’t at his summer school. The best decision I ever made and worth every penny. I’m pretty sure this summer would have been an even longer one had I not done that. I’m forever grateful for her help.

I’m exhausted just typing that list. Well, I’m exhausted with a smile on my face.

To the average family, that list might not seem so impressive. It’s probably what most families do during those 12 weeks of summer. But for us? Not so average. Getting us out of the house is sometimes accomplishment enough. Getting us anywhere is impressive.

Were there days when the minutes seemed like hours and the hours seemed like days? Absolutely. Were there days when I thought that all the progress we’d made with Howie this past year had disappeared in an instant? Definitely. Were there days when I sat at the computer, trying to hide my tears from the boys? More than I care to count. Were there tantrums, meltdowns, and screaming matches at some of those activities? Oh yes (just ask them at the zoo…)

But there were also mornings that started with laughter, when the coffee pot wasn’t the first thing I reached for. Afternoons filled with baseball, and swings and bike races. Nights when I fell asleep easily, knowing that we had made the most of the day.

That is our new version of summertime. The living isn’t easy, but it’s the best we can do. I know we’re not the rent-a-place-at-the-lake kind of family. At least not now.

Gerry has several things to put in his memory bag now, including one more to be made today with his dad at the water park. They’ve waited all summer for the perfect day to go. Can’t get more perfect than today.

Perfect song on the radio
Sing along ’cause it’s one we know
It’s a smile, it’s a kiss
It’s a sip of wine, it’s summertime
Sweet summertime”
– Summertime by Kenny Chesney

It was another one of those nights when I couldn’t sleep.  By 2am, one kid had woken up once, another twice, and I was wide awake from my efforts to get everyone back to sleep again.  So, as I usually do, I just laid there in bed thinking.   Sometimes I think about what to pack the kids for snacks for camp.  Or I wonder if I forgot to put the laundry in the dryer. Sometimes I think about the long list of things I haven’t been able to get to.   This was one of those nights.

But instead of the thoughts leading towards my inability to empty the dishwasher, or put the kids’ clothes away in their bureaus, or the fact that the house hasn’t been vacuumed in a week, I started thinking about all the activities I haven’t been able to do with the kids.  We don’t go to the playground, or play groups, or museums, zoos, or mini-golf.  Or even the library.  The kids ask, especially Gerry, but the answer is almost always “not today”.

I laid there thinking of how I got to this place of being so paralyzed by fear or worry about going out with all three boys.  Maybe it was just laziness.  When Gerry was little, we did everything.  We did an infant play group that morphed into a group of friends that continued to meet for a year after.  I took him to gymnastics classes, music classes, playgrounds, day trips, the beach.  Gerry was a “good kid”, meaning of course that he clung to me and was hesitant to join in any rough-and-tumble activity until he warmed up to the situation.  That meant that he was never the one to instigate any battles or throw sand at other kids.  He would share his toys, almost to a fault.  It was never me as the parent doing the apologizing for my kid, the “I’m so sorry he pushed your kid down the slide into the dirt” statements.

I closed my eyes and remembered when that all ended.  Howie was a cranky, colicky baby.  He never napped well, and when he did it was only on my lap or my bed.  That completely restricted our ability to do much of anything when he was very little.  And as he got older, his sensory issues really started to flare up.  Movies and museums became very difficult adventures.  And don’t even get me started about the zoo.  We took him when he was about 2 years old, and one loud squak from the peacock and we were done.  I ended up having to carry him through the rest of the zoo while his face was buried in my shoulder.  Even storytime at the library became an impossible outing.  Howie couldn’t sit still in the circle to hear the story or listen to the music, so he’d run off.  I’d chase him, Gerry would follow me out, and that was the end of that.  When Lewis came along, I was finished.  I couldn’t chase Howie, listen to Gerry complain about what he’d missed, and try to keep a baby asleep through his nap time.  So we just stopped.

I opened my eyes again and got very sad.  What was it that was keeping me from doing these things with the boys now?  Was it the fear that something might happen?  What could that something be?  A tantrum? Screaming and yelling?  From me or the boys?  Was it the fear that we’d see someone we knew while this was going on?  Was it the kids that I was worried about, or was it my own pride?  I finally settled myself back to sleep, wondering if the schedule for the next day would include more than just a trip to Target.

The next morning, I got the kids their juice and checked my e-mail as I usually do.  In my inbox was this blog post from a mother who is a lot like me.  Like me, she had spent the night planning  the week for her kid, knowing he needed routine and a schedule.  And like me she’s not a planner.  In her post, she writes about realizing there were things she hadn’t done yet with her youngest that she used to do with her older one.  So she put it on the schedule.  It was the push I needed to get us out again.

So “library” went on the Monday schedule.

The boys had been good all day so after Lewis woke up from his nap we got in the hot car and headed to the library.  I chose the one in the next town over – telling the kids that it had better books for their age, but really it was because I figured we’d have less chance seeing someone we knew.  We pulled into the parking lot and a big “Sorry We’re Closed” sign hung on the door (you’d think they’d update their website with their summer hours!!).  So with a deep breath, and with moans from the backseat of “But we wanted to go to the LIBRARY!!!”, I turned around and headed back to our town’s little library.

Luckily for us, and the other people in our town, the children’s part of the library was empty.  I could see the surprise on the face of the librarian when we came in – she recognized me, but not the kids.  Gerry wandered around looking for the one book he hadn’t read yet.  Howie climbed onto the stool, pulled out three random books and proclaimed that “these are the ones I want to buy!”.  Lewis spotted the crayons, climbed up into a chair, and proceeded to draw all over the table.  I felt like I was herding cats.

But we survived.  Not sure the library did.  Somehow we managed to leave with two books for Gerry and three for Howie before Lewis turned off every computer in there.  We even signed up for the summer reading program which I may try to actually do this year.  With Lewis squirming under my arm, we gathered up our books and climbed back into the now screaming hot car.  I was beaming with pride.  Hurray for us!  We went to the library!  And even better, that must have killed an hour or so of the afternoon!  It must be almost dinnertime!

Fifteen minutes.  We were only in there fifteen minutes.

But we did it and that’s all that mattered.  While I’m still wary of going out with all three boys alone, I know that I have to try.  I owe it to my kids to give them the experiences they deserve, and not get wrapped up in my own fears.

I’m now planning our schedule for the rest of the week and thinking of what we could do.  Dare I say, maybe the zoo will be on that list?

But what do you say to taking chances,
What do you say to jumping off the edge?
Never knowing if there’s solid ground below
Or hand to hold, or hell to pay,
What do you say
?” – Taking Chance by Celine Dion

We just got back from the happiest place on Earth.

No, not Disney.

Disneyworld (or Disneyland for that matter) is just not feasible for my family, logistically or financially.  Flying with the five of us, and our kids at all different ages and stages, is just incredibly difficult right now, not to mention very expensive.  Add in admission to the park, hotel, finding food for my vegan husband and corn-free Howie…Disney is just out of our realm right now.  Plus Tim hates to travel.  So for the sake of our sanity and our checking account, we keep our travels to car trips.

So for us, our “Disney” is Storyland, in the White Mountains of New Hampshire.  And for my three guys, this place is heaven on earth.

This was our sixth year at the park.  We first went with Gerry when he turned three (and it was just him) and we’ve gone back every summer around his birthday ever since.  The park has been in existence for over 55 years, and Tim’s mother remembers taking him when he was a little kid.  The park has evolved over the years, of course, but the overall point remains the same – giving kids between the ages of 1-10 and their parents a fun, safe place to have a fantastic family vacation.  For my guys, it’s the one family vacation spot we go.  Howie talks about it ALL year long, and asks starting in December if it’s time to go back to Storyland.

There are many things that make this park special for a lot of families.  For us, with all of our “special needs”, this park is perfect.  First of all, almost all the rides are for kids 36 inches and under.  That means there’s no “sorry, you can’t go on that very cool looking rollercoaster”, or “I know that Crazy Barn looks really awesome, but you’re too small” talk.  There’s very little saying “No”.  My kids get to choose the rides they want to go on, not have the park choose it for them.  Even the baby got to do a bunch of rides, which thrilled him to no end.   Parents can also fit on all the rides with their kids, so it’s truly a family event.

Not to say there aren’t plenty of meltdowns.  But they seem to happen around 2pm at the front of the park at nap time.  Or in my family, when it’s time to leave.

Secondly, the park is relatively small and feels very safe.  Because the rides are geared towards the younger set, there are no teenagers or grownups trying to muscle their way on any of the rides  (nothing against teenagers or grownups, but when I’m with my little kids I don’t want to worry about someone bouncing the ride to make it crazier, or swearing, or causing a ruckus).  Everyone there seems to be either a parent, a grandparent or some relative, oohing or ahhing over seeing Cinderella, waving to the train as it goes by, or sharing an ice cream with their kid.  I’m sure they have had issues in the past with safety, but you wouldn’t know it.  There are no security guards or policemen walking around.  Just Mother Goose and the Old Lady Who Lived in a Shoe.

It’s the most family friendly place I’ve ever been.  They have special “Mama’s Houses” for moms to feed, change and nap their babies, complete with rocking chairs and clean changing tables.  Every restroom has at least one unisex family bathroom, so we can all go in together.  The rides are clean and all the ride operators are incredibly friendly.  We try to go at off-peak times, so we’ve never waited on a line for more than 10 minutes.  If the line is long at one place, we move on and come back at another time.

Thirdly, and most helpful to me, they list all their food choices and ingredients (color coded by allergen) on their website.  That means before we even enter the park I have a list of foods that both Tim and Howie can eat.  Yes, that list is short (for Howie it was five foods that were corn-free) but at least I know those foods so I’m not checking labels.  You can also bring in your own food to the park, which is a life saver (and money saver) for my family.  Our lunch consisted of yogurt smoothies, goldfish and apples that I brought from home.  And they don’t care.

And finally, for us, it’s the one place where all of my kids’ needs are met.  Lewis can go on rides, throw balls with reckless abandon in their “Loopy Lab”, and run through the park from place to place.  Howie can map out his entire day based on all the rides he wants to go on and run/climb/jump and get all his sensory inputs without feeling overwhelmed.  Gerry can do all the rides by himself now, and we save special rides just for him and Tim to do while Lewis, Howie and I ride the train around the park (over and over and over again).  I must say, Gerry was truly the hero of the day.  He went on rides with both Lewis and Howie, even the ones he didn’t want to.  He rode alone on certain ones because Tim and I were in a seat with one of the other two.  And he let Howie go ahead of him in line – twice – when the purple electric car was coming and Howie was screaming that he needed to ride in that specific car.  Tim and I are, for the most part, worry-free.  Our kids smiles make all the difference.

Not that the trip was perfect.  Things were certainly more stressful now that we have a toddler – the car ride was hard because Lewis was trying to nap but Howie kept shouting/making noise/asking for hugs/stopping to pee.  Lewis also did his best to set a new world record in hotel room destruction.  And it was hot.  Very hot.  But we still managed to go swimming, take pictures, and enjoy each other’s company – the three most important components to a successful family vacation.

Howie’s already planning our next trip back.

There is this little song I wrote
I hope you learn it note for note
Like good little children
Don’t worry, be happy”
– Don’t Worry, Be Happy by Bobby McFerrin