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

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