December 2010


Ah, the end of the year.  The moment for looking back and remembering the past – the never ending TV specials of  “Top 100 Songs of The Year” or “Top 10 most fascinating people of 2010”.  It’s the time when we’re supposed to think about all that we’ve accomplished in the year and make our New Year’s resolutions to improve our future.

I stink at making those resolutions…

Read the rest here at It’s Just Another New Year’s Eve at Hartley’s Life With 3 Boys

…and Happy New Year!!

“At some point traditions change or shift.”

This was what my brother told me a few weeks ago through e-mail, when I was whining to him about our inability to do “what we used to do” for the holidays.  He wrote back: at some point traditions change or shift.

New traditions.

Sounds a bit like an oxymoron.  Like jumbo shrimp or controlled chaos.

But in our typically unusual house, that’s exactly what we did this year for the holidays.  Create new traditions.  Because we had to.

December used to be one crazy month.  We celebrate both holidays in our family – starting with Chanukah in our house and with my side of the family.  I used to plan parties for family and friends, with dreidel games and bagels and latkes and gifts for everyone.  This year, I couldn’t do it.  I was emotionally, physically, and financially exhausted.

We had to do something different.  Luckily, Chanukah was early this year and close enough to Thanksgiving so we were able to celebrate it with my family while we were already in Vermont. The boys lit the candles with my mother and opened their gifts at her house, not caring that we were a few days early.

lighting Chanukah candles with my mother

Lighting the candles with my mother

When the actual week of Chanukah arrived, the boys opened one present each night.  While I know that this is the usual tradition for many Jewish families, we’ve always opened all of our presents on the first night.  That’s the way my family has always done it since I was a kid.  But thanks to Chanukah coming so early and my complete lack of planning, many of the kids’ gifts didn’t arrive in time for the first night.  So by default, we opened one gift a night.

And it worked.

There was no sensory overload from a room full of wrapping paper and empty boxes.  There were no gifts left untouched because other gifts seemed cooler at the time.  When books were opened on the third night, it was still just as awesome as the monster trucks opened on the last night.  And now…a new tradition in our house.

Mercifully, there were three weeks between Chanukah and Christmas this year.  When Gerry and Howie were small, we used to travel to my mother-in-law’s house to have Christmas there.  She’d save the decorating until that morning, and the boys would help her put the ornaments on the tree.  We’d spend the day there, opening gifts and having Christmas lunch.

When Howie was two, his sensory issues were becoming more difficult, and we knew he just couldn’t manage a whole day of present opening overload in unfamiliar surroundings.  Lewis was just an infant at Christmastime that year, and I wasn’t keen on taking him out anywhere.  Tim’s family graciously moved their holiday celebration to our house, tree and all.

The tradition has evolved now to something the kids look forward to.  My mother-in-law brought the tree, ornaments and presents to the house, the kids took 30 minutes to decorate it, and then they opened their presents.  A few hours later, we packed up the tree and ornaments and Christmas was over. No Christmas lunch, no unfamiliar surroundings.

And again, it worked.

Lewis decorating the tree for the first time

Very fond of the Thomas the Tank Engine ornament

There were points where it could have gone awry.  I had prepped Howie an hour before my mother-in-law arrived – telling him exactly how the afternoon was going to go and reminded him that the tree wasn’t staying.  When he started to get upset, I brought him back to our conversation and he was able to calm himself down before a meltdown occurred.  And we didn’t even bother trying to have a Christmas lunch or sit down dinner that night.  Even though I bought a ham, only Lewis and I ate it (smothered in maple syrup because I’m a Vermonter at heart).  Tim had cold sesame noodles, Gerry had waffles, and Howie sat in his favorite green chair in the TV room with some goldfish.  It was all he could attempt at that point of the night, and I wasn’t going to bother trying anything else.

I found that changing traditions was a little like changing my kids’ routines.  I had to give advance notice and any shift without planning had the potential for trouble.  When I forgot to buy gingerbread houses this year, Gerry got upset because it was something we “always did” over winter break.  So out I went to find corn-free, dye free gingerbread houses and decorating candy so Howie could eat it all.  It was important to him and consequently, to me.  And we’ve been eating gingerbread all week now.

the boys with their gingerbread houses

Very proud of their gingerbread houses

New traditions.  Focused on the idea of family and the holiday, and not around something that we think we have to be doing, just because we’ve always done it that way.  Not canceling them, but making a change to fit how our family works now.

I think I kind of like it this way.

Tradition, tradition! Tradition!
Tradition, tradition! Tradition!…

Who must know the way to make a proper home,
A quiet home, a kosher home?
Who must raise the family and run the home,
So Papa’s free to read the holy books?
The Mama, the Mama! Tradition!
The Mama, the Mama! Tradition!” – Tradition from Fiddler on the Roof

(I couldn’t resist the song, even though it is the total opposite description of our family…)

I almost had to file this one under “well, that was a bad idea”.

I am a huge fan of Christmas lights and music, and Howie has definitely inherited my love for holiday decorations.  Two years ago, when it was a balmy 70 degrees outside during Christmas week, we took a walk down our street to see the lights on our neighbors’ houses.  And last year, when it was ridiculously cold outside (yes, we live in New England), he and I spent hours in front of YouTube watching the lights on a house in Texas dance to the TransSiberian Orchestra.

So this year, when I heard that there was a huge Christmas festival of lights display at a farmhouse a few towns over, I knew we had to go.  The owner of the house won a contest from The Today Show a few years back, so I figured it had to be good.

Like I usually do, I planned the whole night out perfectly in my head.  We’d eat dinner early, drive the 30 minutes in the car, and get there just as he opens the gates at 6pm.

I am really good at planning things out in my head.

We left on time but hit a detour about 10 minutes from the farmhouse.  We later found out the police set up the detour to keep traffic flowing in one direction towards the light display.  We turned the street corner at 6:09pm…

…and stopped.  Dead stop.

A traffic jam that I have only seen in my old commuting days into Boston.  Stop and barely go.

About 10 minutes into the ride (which translated into moving about 50 feet), Howie started kicking my seat and saying he wanted to go home. I looked at Tim and thought we were doomed.  There was no way to turn around easily.  The kicking continued until I realized that what he really needed to do was pee.  Thankfully I had a few of Lewis’ diapers in the car, and breaking about a hundred traffic laws, I unbuckled Howie from his seat and had him use the diaper, all the while reminding him that it is “very dangerous to unbuckle and stand up in a semi-moving car!”

Slowly we chugged along.

All I can say is, thank goodness for the DVD player in the car.  I will never ever live without one again.

After about 5 Curious George episodes, we were finally at the gate.  For those of you who don’t watch Curious George, that translates into an hour and 15 minutes.  On one street.  One mile total traveled.

But for the kids, it was worth it.  They marveled at the lights along the fence and the music coming from the speakers.  They watched the train drive in circles past our car.  I saw their eyes widen when we pulled up next to Santa and he shouted “Merry Christmas!”.  Because for these Jewish kids, that’s the closest they’ve ever been to jolly old Saint Nick. On the ride home, they talked about their favorite part of the light display, and the conversation continued in the tub later on and at bedtime.

The next morning, everyone slept until 7:30am.  Straight through the night.  Giving me the best gift of the holiday season: my first seven hours of continuous sleep in almost five years.

For those of you who celebrate it, have a very Merry Christmas weekend.  And for those of you who don’t, feel free to join us for our traditional Christmas eve dinner: Tim’s homemade vegetable sushi.

picture of the boys not sitting nicely for a picture

You didn't think we could get them to look at the camera at the same time, did you?

And so this is Christmas
I hope you have fun
The near and the dear one
The old and the young
A very merry Christmas
And a happy New Year
Let’s hope it’s a good one
Without any fear” – Happy Xmas (War is Over) by John Lennon

30 seconds to go to the bathroom uninterrupted.

45 seconds to heat up my coffee in the microwave for the 4th time today.

5 minutes to take a shower without someone having a tantrum.

10 minutes to eat dinner without someone needing a giant squishy hug.

1 hour for a power nap.  Or better yet,

8 hours of continuous sleep.

I’ve been thinking a lot about time.  It’s not a surprise.

365 days since my son’s PDD-NOS diagnosis.  Today.

One year since I sat for 2 hours in the doctor’s office to confirm what we already knew.

10 minutes to read the “red flags” pamphlet and wonder why no one had given this to us earlier.  40 minutes on the phone with our local autism resource center to learn about support services in our area.  90 minutes in an IEP meeting to create a plan for my son for the next 12 months.

A year.

I look back at where we were last December 21st.  Confused.  Scared.  Overwhelmed.  Alone.

Now, today.  Still confused.  Still overwhelmed.  But no longer scared.  And no longer alone.

A year filled with more successes than failures.  30 minutes of the boys sitting together watching Wow Wow Wubbzy.  A 2 day trip to Storyland.  A Thanksgiving dinner that lasted more than 2 minutes. A bedtime routine that is now 5 minutes instead of 45 minutes.  The day I left the house for 19 hours to see Glee in New York City.

All of these moments could have never happened a year ago.  Thanks to intensive services and lots of therapy.  And time.  We had time on our side.

Our son will have a lifetime of hard work ahead of him.  But we’ll get through each minute together.

When I first had kids, my friend told me that the days drag but the years fly by.

365 days.

A year that started with such heartache.  A moment now filled with hope and promise.  Tomorrow, the clock will start all over again and we’ll be in year two of our diagnosis.

I know that someday I’ll sit with my warm coffee and my hot dinner after a long shower following a full night’s sleep.

I’m ok with that someday not being now.

Time is waiting
We only got 4 minutes to save the world
No hesitating
We only got 4 minutes, 4 minutes” – 4 Minutes by Madonna and Justin Timberlake

Jen, who writes at The King and Eye, started a blog link called Blog Gems.  The idea is to air out our old posts every week for people who may not have read them before.

This week, she asked us to share our first public post.  This one is the first one I posted on this blog with the music title theme:

The Long and Winding Road

Check out my post and click on the picture for the link to Jen’s blog and the other great first public posts.

 

It’s the 17th of the month again (that went by fast!) and I’m writing at Hopeful Parents.  Today’s it’s about the moment when I knew my husband really got it.

Click Here for Parents Are People

The paperwork has been sitting on my desk for three weeks now.  I can’t do it.

All those forms that I need to complete if I want to get Lewis evaluated by the team at the Center for Children with Special Needs…they are still blank.   I can’t fill them out.

I started to – I really did.  When we got home from the appointment with Howie’s developmental pediatrician (remember her?  she called me “Super Mom“?), I sat down at my desk with the stack of forms she gave me.  It was the quickest way to get in to see the speech/language pathologist, she told me, since we were still concerned about his speech delay.  And it couldn’t hurt to have a full evaluation, could it?

So there I sat that afternoon, pen in hand, ready to answer all those questions again, just like I did a year ago for Howie.

But then my eyes glanced down to the bottom of the page.  “Please include a picture of your child here.”

I stopped.  I put the pen down.  And blinking back tears, I walked away.

That was three weeks ago.  Right now, those forms are staring at me as I type (ok, they are actually under a pile of blue paper snowflakes, but they can still see me and I can see them…)

I can’t fill them out because I don’t see it with Lewis.

I’m going to try to explain what it is.

Here’s what I don’t see: I don’t see the long, protracted meltdowns that seem to go on forever.  I don’t see the impulsive behaviors and the inability to control them.  I don’t see the feeding issues, the sleep issues, or the motor planning issues.  I don’t see a child uncomfortable in his own skin.  I don’t see a child desperately trying to interpret the world around him.

Here’s what I do see:  I see empathy.  I see pretend play.  I see a child who can feed himself, undress himself, and sleep through the night unassisted.  I see the ability to hold a crayon and do a puzzle and transition from one activity to the next without a tantrum.

It was the complete reverse with Howie.  All the things I see with Lewis, we didn’t see with Howie.  And all the things we worried about with Howie, we don’t with Lewis.

That’s the it, I guess.  I don’t see the autism.

And that’s why I couldn’t put his face on that form.  Because I’m not sure it belongs there.

This is not to say that I’m not seeing things that worry me. I still see a child who understands everything but still has a very hard time expressing himself and that gap concerns me.  Lewis is very shy and won’t talk at all to anyone he doesn’t know.

There are some sensory issues too – he has a fit if his socks aren’t just right and would be happiest staying in his pajamas or not wearing any clothes at all.  This sensory avoidance stuff is very familiar, though.  Throw in a hatred of turtlenecks and a fear of touching cotton balls and this kid is…me.

So long story short, I don’t know what to do.

I do think he needs to see a speech therapist again for another evaluation.  We’ve come a long way but I don’t know where we really are in the grand scheme of all-things-speech.  If I fill out those forms for the developmental evaluation, we could see someone quickly since this particular clinic takes the youngest kids first.  But I can’t get past the fact that in my heart I feel like we’d be wasting all the other doctors’ time – that we would just be going there to get a faster speech eval.  I can’t stand the idea that we might take up an appointment time that we don’t really need.  We could use up a spot that could have gone to some other family – one desperately seeking answers and help.  A family like just like ours, only one year ago.

But what if I’m completely wrong?  What if I’m not seeing it because I don’t want to see it again?

Would I be so quick to give up my spot on the appointment list if this was my first child and not my third?

Sigh.  Parental guilt.  Never ending.

I do know one thing.  The speech pathologist from Early Intervention will come back in February to test Lewis when he’s 2 1/2 years old.  She promised she would.  I’ve already called her and left a message to set up an appointment.

And for now, I think I’m going to stop there.

I’m trusting my gut on this one.  If I’m wrong…if I’ve missed something…

I’m keeping all that paperwork on my desk.  Just as a reminder that it’s there, waiting for us, if we need it.

“Sometimes I think I know too much
’bout what goes on in the real world and such
Half of me is certain, the other isn’t sure
One half has the symptom, the other has the cure…

It’s a fine line, a very fine line
Split decision
It’s a fine line, a very fine line” – Split Decision by Steve Winwood

It started with paper snowflakes.

We were all over at our friend’s house for a pizza party, and Gerry and his friend were creating paper snowflakes.  They made them in all shapes and colors and pretended to sell them to us from their “artificial snowflake store”.

On our way home, Gerry was working on one of his money making schemes, trying to figure out how to make $400 – enough to buy the Lego Death Star.

“If I sold one paper snowflake for a penny, how many would I need to sell?”

Tim and I started to do the math with him in the car when he interrupted us.

“Could I sell them for charity?”

Of course, we answered, knowing that there would be very few people who would buy an eight-year-old’s artwork, but we were going with it.  I started to explain what a charity was to give him some ideas.  People donated to charities for causes that they believed in.  There were charities to help people who didn’t have enough money to eat, charities to help the environment, and charities to help find cures for diseases.

“Is there a charity to find a cure for autism?”

I exchanged sideways glances with Tim.  “Of course,” I said.

“Then I want to do that one…”

(my eyes are getting teary at this point)

“…because I want them to find a cure since Howie’s been getting a little wild lately.”

(gut punch.  Eight year old sibling gives and takes away)

We quickly ended the conversation in the car and I told him we’d talk about it more when we were home.

A few hours later we were getting the boys ready for their showers.  Gerry was sitting with me in Lewis’ room while Howie was with Tim.  I told Gerry why we needed to end the conversation in the car.

“Howie doesn’t know he has autism, so I didn’t want him to get confused or upset by what we were saying in the car.  He’s too young to understand.”

“Well, when will he know?”

“I’m not sure,” I told him, “Maybe when he’s older like you he’ll know.  But right now we don’t want him thinking that he’s any different than anyone else.”

As soon as it came out, I knew those words were a mistake.

“What’s wrong with being different?”, Gerry asked.

I started to backpedal.  The whole “there’s nothing wrong with being different” phrases started stumbling out of my mouth.

“I feel different because I’m Jewish.  Everyone else in this town celebrates Christmas.  And you tell me there’s nothing wrong with that.”

(what continued here for a bit was a deep religious and spiritual conversation that I was not ready to have with an eight year old.  Started something along the lines of “but my friends who had their first communion got thousands of dollars” and moved to “how come Dad isn’t Catholic anymore?”  But that’s a blog post in itself…”)

After his brothers were in bed, I went into Gerry’s room and sat down on his bed.

“I chose the the wrong word when I said I didn’t want Howie to think he was different.  You’re right, it’s good to be different and we should celebrate those differences.”

He looked at me thoughtfully.  “Yeah, being different is good. You wouldn’t want to dress the same and act the same way as your best friend, because then no one would want to be your friend because they would all think you were just copying him.”

He continued with “There’s good different and bad different.  Good different would be if someone had a hard time paying attention in class and they needed something like a pencil to fidget with to help them, that would be ok.  But if someone wasn’t paying attention just to be annoying, that wouldn’t be ok.”

Right, I said.  People learn in different ways and sometimes need things to help them with their attention.  But if someone was disturbing the class just to be funny, that wouldn’t be good.

Gerry paused for a minute to think about this.

“Is Howie in a special class for kids with autism?  Is there a group for kids like him to get together like I do for SibShop?”

I explained that Howie was in an inclusion class at his preschool with kids of all different abilities and he meets with his teachers and other kids to learn special skills to help him pay attention in class and at home.  Different from SibShop, I said, but still learning important coping skills just like Gerry was in his group.

“Are they helping Howie to stop making all his noises?”

Big sigh. “Yes,” I said.  “He makes those noises when his body doesn’t feel right and they are helping him understand what to do with his body when he feels that way.  We’re working on that at home too.  So when we see his body moving really fast or he’s making a lot of noises, we let him run laps in the house, or get his weighted blanket.  Or have a pillow fight with him.  Those things make his body feel better.”

Gerry looked at me quizzically.  “Pillow fights help him feel better?”

“They do.  So if you see him moving really fast in his chair or making a lot of noises, you can always ask him if he wants to have a pillow fight.  Not a really rough one, but a gentle one.  It might help him.”

He was quiet for a few minutes.

“What if I invented a machine that was a big circle loop and pillows hung from it?  It would go around in a circle and Howie could stand in it and get hit by the pillows. That would help him, right?  I would make sure it was 2 feet off the ground so if he fell he wouldn’t keep getting hit by the pillows.”

(getting teary again)

“I think that’s a great invention.  I’m sure he’d love it.”

“Probably pretty expensive to make, though,” he said, pulling the covers up to his neck.  “I’ll have to think about it more.”

The next morning, I came downstairs to find blue paper snowflakes all over the kitchen table.  And as I sat in the chair, rocking Howie and squeezing him with all my strength, Gerry worked furiously with the scissors making all different patterns of snowflakes.

“You know, Mom.  No two snowflakes are alike.  They are all different.”

That is something to celebrate.

The road is long
With many a winding turn
That leads us to who knows where
Who knows where
But I’m strong
Strong enough to carry him
He ain’t heavy, he’s my brother” – He Ain’t Heavy, He’s My Brother by The Hollies

It’s time for another break here.  Time for another “B Side” post.

I started these posts back in October when I decided I needed to write about something else besides “all things autism”.  My B Sides are going to be stories about my favorite memories, ones that have had a lasting impact on my life.  I was  going to try to write a “B Side” at least once a month but November skipped past without one.  Today’s Special Needs Blog Hop about random thoughts reminded me it was time for another one.  So for today’s “B Side” post – Life is a Highway.

The year was 1987.  I was 15 years old and just passed my learner’s permit test.  Barely passed.  Back then it was a paper test and you couldn’t get more than four answers wrong or you failed.  I got four answers wrong.  But I ran out of there with that yellow paper waving in my hand like they do now on American Idol.  The beginning of teenage freedom.

I begged my father to take me out right away for a drive.  He agreed and we climbed into our Jeep Cherokee.  It was January in Vermont and the roads were covered in snow and ice.  My father, ever the cautious one, was reminding me to take it slow.  Very slow.  Very very slow.  Too slow for this 15 year old.

We got about 3 miles from the house driving along the back roads in our small rural town.  I made it through my first stop sign.  My father started breathing again.  Until he started screaming:

“You’re too far right!!  You’re too far right!!”

And into the ditch we went.

(several years later when  my dad was sick, we joked about his “too far right” comment – he said he was really talking about my politics.  Considering how left of center my dad was politically, it wasn’t hard to be too far to the right from him.  But I digress…)

We were sideways in the Jeep in the ditch.  Because of all the snow, I couldn’t see the side of the road and in we went.  We climbed out of the car and trudged to a nearby house to call my uncle for help (no cell phones back then of course).  And for the 30 minutes it took for them to pull the Jeep out of the ditch, I avoided my father’s glare.

After checking the car to make sure there was no damage, my father handed the keys back to me.

“You’re driving home.”

I remember my shock and fear like it was yesterday.  I had come inches away from totaling the car.  Yet here he was, handing the keys back to me, not taking no for an answer.  So very slowly, very very slowly, I drove us back home.

I think back on this moment as a mother with three kids of my own and now I get it.  My father knew that if he drove home, my confidence would be shot and I would be terrified to get back in the car.  And I was.  I was a nervous wreck.  A few months later I was involved as a passenger in a different accident (not my fault this time) and it took a long time for me to get behind the wheel again.  But at that moment my father had to show me that he believed in me.  He wasn’t going to let one mistake change that.  If he got mad or yelled or kept me from driving for a while, my anxiety would win and I’d end up a very nervous and unsafe driver.  My father chose the path of trust.  And several extra hours of practice before I was allowed to test for my license.

I still hear his voice in my head when I drive sometimes – when I’m changing lanes on the highway or reminding my kids to buckle up for safety.  In eight short years, my oldest will get his learner’s permit.  And I hope that I can show my son that I have the same confidence and trust in him that my dad had in me.

Or I might just make my husband teach him.

Me, my brother, and my dad. Before our driving turned him gray.

There’s no load I can’t hold
Road so rough this I know
I’ll be there when the light comes in
Tell ‘em we’re survivors

Life is a highway
I want to ride it all night long” – Life Is A Highway by Tom Cochrane

Hot Wheels and Storyland.

For two and half years, that’s all we hear from Howie.   All he talks about are Hot Wheels cars and Storyland amusement park in New Hampshire.

I’ve been thinking a lot about his obsession with these two things lately.  Lewis, our two year old, is currently fascinated by monster trucks.  He carries them everywhere, even to sleep.  He races them around the house and smashes them into each other.  He begs Tim to play the Monster Jam game on the Wii, and then picks out the truck for him to use in the game.  It’s even helped him to start talking.  He knows all the trucks’ names and it has slowly evolved from something completely unintelligible to “brwn mo mutt” for the brown Monster Mutt truck and “Max D!” for Maximum Destruction.  When Tim is finished with the game, he’ll ask for “mo-monstr-jam?” (all one word).   Sometimes, those words are just music to my ears.

My kids have always had their “thing” that was their obsession.  With Lewis it’s the monster trucks, and with Gerry we’ve been through everything from Thomas the Tank Engine to Playmobils to Legos.  He’s currently stuck in all things Star Wars.  And in a sense we help feed into those obsessions.  We joke that every year there’s a theme for birthday presents for the boys – last year it was Curious George for Lewis and this year Monster Jam.  Same with Gerry.  Each year there’s an obsession, but each year it’s something different.

Not for Howie.  It has been Hot Wheels and Storyland.  Always.  Never changing.

It’s led me to have a love/hate relationship with those two things.  I’m pretty sure it’s because it’s how we first saw those red flags of autism.

Let me start with Storyland.  We’ve been going there for years, ever since Gerry was three and before Howie was born.  Yes, Gerry loved it there – the place is amazing and designed for kids ages 1-10.  But he didn’t talk about it all the time.  The year we went with Howie when he was two, it was all he could talk about.  He studied the map like it was the Bible.  He knew where every ride was and which ones he wanted to go on, and which ones he was going to avoid.  From June 2008 to now, he asks us constantly to go back.

I’ll admit I use it to my advantage.  I told him to read it on the toilet when we were toilet training because I knew he would sit longer.  When I needed him to calm down, I’d spread it out on the floor, point out the “Flying Shoes” ride on the map, and I knew I’d have a good 10 minutes to clean up, check my e-mail, or make some coffee.  I tried to use it as a way to show the changing seasons, as in “we can’t go to Storyland now because there’s snow on the ground, but when the snow is gone, we can go”. I didn’t bet on the lack of snow last year in New England, so the lesson then was lost.

The obsession with Storyland wouldn’t be enough of a red flag on its own if it wasn’t also accompanied by the Hot Wheels car craze.  With three boys, our house is covered in vehicles.  We have hundreds of Hot Wheels cars.  We first started collecting them when Gerry was little, used as a incentive for toilet training.  Somewhere around 18 months, Howie became attached to the cars and never let go.  It’s all he ever wanted to play with.  And because he would sit for long periods of time with them, lining them up and watching their wheels move back and forth, I let him.  Just like with the Storyland map, it was the only way I could get anything done.  I’d encourage it.

It wasn’t until our meeting with the developmental pediatrician last year that I realized this was a “sign”.  A flag.  Howie rolled a car back and forth on her desk for 10 minutes while she talked to me.  I didn’t even notice that he was doing it.  I did notice her eyes watching him the whole time.  When she told me later that this was his “stimming”, I was floored.

All of this is making me watch Lewis like a hawk with these monster trucks.  I panic slightly when he lines them up on the rug, then breathe when he pulls them out of line immediately to race around the rug.  I feel my stomach go into knots when I catch him lying on the floor watching the wheels move, then relax when he leaves the truck there to go play with something else.  I watch for the long extended meltdowns when he can’t find a truck, and wonder if he’ll get mired in all things Monster Jam.  So far, it’s not the same.  Lewis can easily move from playing with the monster trucks to serving me tea from his pretend kitchen to demanding to hear more music from the Glee soundtracks.  That last one I’ll indulge at any time.

But not Howie.  It’s still all about the Hot Wheels and Storyland.  Just yesterday he asked me if I could open up Storyland so we could go.   And for Hanukkah, we got him a special Hot Wheels backpack that opens up into a racetrack mat.  He packed it full of his favorite 50 or so cars to “save to race in the basement”.  We don’t have a finished basement.  It’s just something he says.

I don’t know if it’s right to continue to feed his obsession or not.  All I know is that he loves those cars.  And Storyland.  In a world that can be so difficult for him, is it wrong for us to deny him the things that make him feel…happy?

Time to go.  Two more nights of Hanukkah and I have a few more monster trucks, Hot Wheels cars and Star Wars figures to wrap.

You are an obsession
I cannot sleep
I am your possession
Unopened at your feet
There’s no balance
No equality
Be still I will not accept defeat” – Obsession by Animotion

Next Page »

Follow

Get every new post delivered to your Inbox.

Join 2,497 other followers