The Scene: Pizzeria Uno’s Restaurant

The Date: October 7th, 2010

The Occasion: Our Anniversary

The Players: The Whole Family

 

Our main character had a great plan for that night, or so she thought.  The whole family out to celebrate.  She had forgotten that it was a Thursday night and the kids were usually physically and emotionally spent after the long week of school.  She neglected to notice that they wouldn’t be eating until almost 6pm, about 45 minutes later than they usually do.  And she had forgotten, maybe on purpose, that one of her kids has autism spectrum disorder.  She just wanted a nice dinner out with her family for her anniversary, dammit.  Just this one time.

I sent Tim an e-mail around 4:30pm asking if he wanted to meet us out for dinner for our anniversary.  Seemed like a pretty good plan at the time.  It had finally stopped raining, Gerry didn’t have any homework, and Lewis had taken a pretty good nap.  Plus, I had to go out anyway to get some special cupcakes for Howie to bring in to school so he could eat a treat along with the other kids celebrating birthdays.  We agreed to meet at the restaurant at 5:30pm.

My first mistake happened before we even left the house.  Howie had asked me for some juice as I was packing up our toys/cars/coloring books/yogurts/juice boxes for dinner.  I ignored it, thinking I’d remember to bring his juice cup in the car with me.  I didn’t.  His juice cup is his comfort – when he’s feeling out of sorts or not feeling great, he asks for juice.  He asked three times.  I missed it, and told him in the car that he’d have to wait until we got to Uno’s.

Tim was running late from work, so I brought the boys into the restaurant myself.  We used to go to Uno’s a few times a month, until it starting getting too expensive once all five of us were each ordering our own meals.  In the past, we’ve sat on one side of the restaurant – the side where the windows face the parking lot where we park.  This time, the host brought us to another side – a side where the walls were too high for Howie to see out of from his seat.  Cue meltdown number one…

With Lewis in one arm, my bag of food and tricks slung over the other arm, I dragged Howie screaming across the restaurant to our booth.  Wailing “BUT I WANT TO SIT OVER THERE!!”, I grabbed him by the arm and pulled him into the bench seat of the booth, while the host took about an hour to get me a highchair for Lewis.  Gerry slunk into the corner of the other bench.  Lewis threw the crayons onto the floor.  Howie continued with “Mama! Mama! Mamaaaaaa!” – his cry when he can’t formulate the words to tell me what is wrong.

(Now I know at this moment I could have stopped this.  Well, I know it now.  I could have asked the host to move us.  I could have calmly tried to understand from Howie what the problem was.  And had I known that things were going to continue to spiral downhill from here, I probably would have said something.  But instead I dug in my heels.  And I turned around and yelled at Howie to stop or else he would be waiting for us all in the car with Dad.  You know, whenever Dad got there.)

The world’s most indifferent waitress came over to take our drink order, and I told her we were actually ready to order our food.  Tim had already given me his pizza-no-cheese order, Gerry and Lewis always get the same thing, and I had brought Howie’s yogurt to have with french fries.  I was trying to order all this while Howie was trying to climb into my lap…check that, climb into my skin…still screaming “Mama! Mama! Mama!”.  The waitress looked annoyed to have to be listening to me through all of that.  Imagine trying to talk through it.

The waitress quickly ran away to process our order, I got Lewis drawing circles on the kids’ menu, and I was finally able to turn my attention to Howie.  “What IS it???” I asked him, much more loudly than I wanted to.

“I don’t want to sit HERE!”, he shouted.  “I don’t like the fans and the red light on the seat!!”

I looked up.  Above our heads were several circular fans, including one very old one up near the ceiling.  They were off, but for some reason were still bothering Howie.  And on top of each of the posts near our booth were two red lights.  Completely innocuous to the untrained eye.  Totally overwhelming to the kid already on sensory overload.

“I want to sit where there are yellow lights!  Not the red ones!!”

Thankfully Tim arrived at this moment.  He took Howie away from the table to look at the giant fans to see how they worked.  I walked around the restaurant with him to show him that none of the tables had yellow lights, and that if we sat at a certain angle, we couldn’t see them anymore.

We sat back down at our table and Howie climbed into my lap.  He turned around and gave me one of his hugs – the ones that tell me he’s trying so hard to calm his body down and feel better.  The hugs that dig deep into the skin on my neck and tear at my soul.  While he’s hugging me, he whispers into my ear:

“Why is everything in my life so difficult?”

At this point, our main character’s eyes filled up with tears.  “I don’t know, sweetie.”, she says. “I just don’t know.”

————————————————————————————————————————————————–

“‘Lady Peaceful,’ ‘Lady Happy,’
That’s what I long to be
All the odds are in my favor
Something’s bound to begin
It’s got to happen, happen sometime
Maybe this time I’ll win” – Maybe This Time from Cabaret

As you might have noticed, I don’t write much about my relationship with my husband.  I share a lot here – maybe too much sometimes – but my goal is to write about my kids and my family as a whole.  Of course, I write about what an amazing father and partner he is and I seriously have no idea how I’d get through the day without him in my corner.  But my marriage itself is something I try to keep private, just between the two of us.

But…

Today is our ninth wedding anniversary.

And I feel compelled to say simply this:

When we scrambled to write our vows the morning of our wedding, I never realized how one phrase would continue to ring true for me.  On that chilly October day, I told him that I loved how he “made me laugh when I wanted to cry.”

At the time I was talking about the loss of my father.

Now it’s about our daily struggles as a family.

A true partner knows just what to say when you need them to say it.  To create perspective.  To see the joy when all you can see is the pain.  And loves you even on the days when you don’t love yourself.  I am lucky enough to have that a million times over.

I know the statistics aren’t on our side.  But I think the title of this post says it all.

Anyway, I found out I’m nothing without you
Cuz we belong together now
Forever united here somehow
You got a piece of me
And honestly
My life would suck without you
” – My Life Would Suck Without You by Kelly Clarkson

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

In honor of today’s SPD blogger network blog carnival, here’s a picture of my little guy at my mother’s wedding…

"It's not so noisy now!"

The noise canceling headphones allowed my little guy to sit at the head table near the music and not get upset.  The pressure of the headphones on his cheeks helped him feel better as well.  (We also took these to Toy Story 3 thank goodness!!)

The SPD blogger network is a group of wonderful mothers and fathers writing about their kids with sensory processing disorder.  For more information on SPD and the blogger network, click on the link on the right hand side of my home page that says “SPD Blogger Network”.

Kodachrome, they give us those nice bright colours
They give us the greens of summers
Makes you think all the world’s a sunny day, oh yeah
” – Kodachrome by Paul Simon

(or more appropriately, going to the golf course)

My mother is getting married this weekend.  We are all very excited for her – she has met a wonderful guy and lightning really seems to have struck twice for her.  When we heard the news I couldn’t wait to share it with the boys.  As I was telling them all about it, who would be there, and when it would be, these words came out of Howie’s mouth:

Mom?  Will you keep me safe at Grandma’s wedding?

Gulp.

Initially, I didn’t know what to say.  I wasn’t exactly sure what he meant, and gave a quick “Of course!  It’s my job to keep you safe.” and dismissed it at that.  My kids have been to many weddings (including their other grandmother – how many kids can say they’ve been to both grandmothers’ weddings?) so it wasn’t the fear of the unknown.

As I found out a bit later, it was the fear of the known.

A few weeks later, we were talking about the wedding again.  And again Howie asked me if I would keep him safe.  As the wheels began to spin in my head, I asked him what he meant by that.  “The music, Mom.  And the noise.  Will you keep me in a safe place so I’m not near the noise?”

Gulp again.

Any excitement I had been feeling about the wedding turn to instant panic.  Howie’s sensory processing disorder was about to take over any and all planning for the event.  As I mentioned, we had been to several weddings before, including a few loud ones about 2 years ago.  We spent most of the reception outside in the mud – Tim and I couldn’t even drag him into the tent when the music was playing.  Finally we gave up, and went back to our room to escape.  But that was different.  We didn’t have to be part of the festivities.  This was my mother’s wedding, and I (we) had to be there.

In the past, I would have melted into a total state of anxiety, my head filled with ways that this could go wrong.  Instead, I called on my army of supporters – his teachers from school and his occupational therapists.  They know him almost as well as I do.  And I asked for help.

His incredible teachers and OT sprang into action and helped me form a game plan.  First we created a social story for him about the wedding weekend.  For those of you who don’t know what a social story is, it’s an “intervention attempt to improve the social skills of children with spectrum disorders by using individualized short stories to help them interpret challenging or confusing social situations. The stories have a specifically defined style and format. They describe a situation in terms of relevant social cues, the perspective of others, and often suggest an appropriate response.” (thank you Wikipedia)  It’s a way of using pictures and words to help prepare the kids for what is coming, so that transitions are easier and the routine is predictable.

His teacher used pictures of our family to describe each day what was going to happen – from the day we leave until the day we come home.  She used a format that was familiar to Howie from school so he understood it completely.  She wrote places where he might see lots of people, prepared him that the party might be loud, and there will be a lot of unfamiliar smells from the food, and that he can ask in a “just right voice” anytime he needs a break.  She had pictures of him in handsome clothes, and wrote that we would be taking lots of pictures.  She even wrote out a list of 4 wedding rules for him to follow during the ceremony.  His teacher came over to the house yesterday and went through it step by step.  And although the picture she used for our car wasn’t exactly right as Howie pointed out, he really got it.  At one point he told her that he wanted to be in a safe place for the wedding, and she showed him the page for asking for breaks and gave him the words to use with us.  It was awesome.

Next we put on our SPD lens (thanks Martianne) and looked at the weekend through Howie’s eyes so we could anticipate his needs.  I bought Therabands for the car ride up and have his weighted blanket ready to go for both the car and for sleeping.  I’m bringing his own pillow for the bed.  I asked my mother if she could put us at an end of the head table as far away from the dance floor and speakers as possible, and we’re bringing our noise canceling headphones.  Tim’s in charge of taking him outside to the golf course area or even the car if he gets overloaded at the reception.  We thought about at staying at a hotel when the weather looked like it was going to be in the 90 degree range because Howie sleeps in long sleeves and four blankets and there’s no air conditioning at my mother’s house.  Now the weather looks a little more tolerable, and with some fans for air and white noise I think staying with at her house with my family will be possible.  We’re going to stay busy – walks, kickball games with cousins, races before the wedding, lifting suitcases, obstacle courses – anything to keep his body moving as much as we can to give him the sensory input he needs.

And of course, lots and lots of hugs and squeezes whenever it is requested.  Because after all, it is my job to keep him safe.  Even at my mother’s wedding.

“Spring is here,

theeee sky is blue.

Whooooa! the birds all sing as if they knew.

Today’s the day, we’ll say, “I do”and we’ll never be lonely anymore.” – Going to the Chapel by The Crystals