May 2010


I am getting ready to get “Gleeky”.

Yes, that’s right.  This weekend I’m going to New York City to see the cast of “Glee” perform at Radio City Music Hall.  Jealous?  I thought so.

People who know me know how much I love music and musicals especially.  I grew up listening to the soundtracks from such Broadway plays as “Fiddler on the Roof”, “Jesus Christ Superstar”, and “Grease”.  I could sing every line from every song and act out every scene from each play.  There’s something about a musical that just sucks me in – the incredible ability to use music to tell a story and send a message home.   I think that’s why the show “Glee” has really struck a chord with me (no pun intended).

This trip to New York City marks the first time I’m leaving all three boys for longer than 2 hours.  My friend and I are taking the train there in the morning, going to the concert, and then taking the train back up again that night.  In total, I will be gone about 19 hours.  I’ve asked my mother to come down to help out for the day, not because I don’t think Tim can handle being alone with the boys, but I know how nice it is to have an extra pair of hands around.  Having her come visit was more for my piece of mind –  knowing that another person is there in case something happens just makes me feel better about being gone for the day.

I’ve been spending the past few days doing laundry, grocery shopping, and making lists for Tim and my mom about the day.  When you have a kid like Howie, keeping a routine is so important.  I need them to know what to do when he gets upset and is looking for me for a hug.  I need them to look for signs that he needs a break, or a snack, or some exercise.  I want to make sure I have the right foods in the house for them, pajamas all laid out – anything I can do to make it easier for those 19 hours.

It’s all so I can enjoy myself without worrying that things are a mess at home.  This trip is a treat for me – those 19 hours are all MINE.  I need time to be without the kids, and the kids need time to be without me.  I need to be able to be… just  me and not Mom.  I can’t wait to eat when I want, eat what I want, and go to the bathroom alone.  I can’t wait to sit in the balcony of Radio City Music Hall and sing my heart out along with Lea Michele, Cory Monteith, and the other cast members from the show.  And, after those 19 hours,  I’ll be ready to get home refreshed and be a better mom to my kids (with a little Glee in my heart).

(a special thanks to my fellow uber-fan Nikki for getting the tickets and going with me on this adventure, and to my amazing husband Tim for giving me this trip and all my Glee CDs as a Mother’s Day present and for indulging my Glee addiction every Tuesday night…as the Glee kids would say “My Life Would Suck Without U”.)

Don’t tell me not to live,
Just sit and putter,
Life’s candy and the sun’s
A ball of butter.
Don’t bring around a cloud
To rain on my parade
!” – from the musical “Funny Girl”

I don’t usually post so frequently, but I came across this website and just had to link to it here.  This mother sums it all up pretty well in her  “OPEN LETTER
TO ANYONE WHO HAS EXPERIENCED MY SON’S MELTDOWNS”.

Just wish I had thought of it myself.

http://www.mcsweeneys.net/links/openletters/14son.html

Lonely days are gone, I’m a-goin’ home,
‘Cause my baby just a-wrote me a letter –
Joe Cocker

Dear They Might Be Giants,

I wanted to take this opportunity to thank you for a terrific concert this weekend in Arlington, Massachusetts.  We drove in with all three boys to see your show, and to be honest, I wasn’t sure what to expect.  It’s hard for us to take all of our boys anywhere, and this was our first concert together.  But we love your music, so we thought we’d give it a try.

At first, things didn’t go all that smoothly.  We waited outside in line for about a half hour, about 20 minutes longer than I had anticipated.  We were in the shade for the most part, so it wasn’t all that bad.  I thought we were doomed though when we went into the theater box office to get our tickets, and Howie started to gag from the mix of the popcorn and people smell.  All those bodies and all those food smells are usually the “kiss of death” for him, so I thought we were leaving right then and there.

See, my 4 year old son has sensory processing disorder.  This means that he has trouble regulating his “sensory input”.  He’s overly sensitive to the world around him – smells, sounds, noises, crowds…all these things come bombarding at him all at once, and his body and brain have trouble making sense of it all.  Sometimes his behavior spirals out of control.  Sometimes he retreats into my arms.  Sometimes both.  Taking him to a concert with live music was really bringing him out of his comfort zone.  Add this to the concert starting right at Lewis’ nap time, and I was beginning to think I should file this trip under “What was I thinking?”

Once inside, we were lucky enough to find four seats together in the back row by the aisle.  We know most people shy away from this spot, but it was perfect for us.  We could see but it wasn’t too close for the lights to be too bright.  We could hear, but it wasn’t too loud.  And most importantly, we could get up and leave easily if needed.

But, They Might Be Giants, you did an amazing job of knowing your audience and planning your show accordingly.  You kept the lights on in the theater so the kids could see each other and their parents.  There were no sudden loud noises or explosions (well, except for the confetti machine, but we were far enough back that we were able to enjoy it without getting scared).  You kept the banter between songs to a minimum, and played familiar songs from all your kids’ albums so that we could constantly remind our son “Hey!  We know this song!”.  And you even threw us a parents a couple of songs too from the old days (thank you for Istanbul- one of my favs!)  My oldest son was singing along to all his favorites from “Here Comes Science”.  Your album re-ignited his love for science, and he’s telling grownups about the periodic table and how the sun is made of gases.  My youngest fell asleep (no offense, but he’s the third child and it was nap time).

And after an hour on my lap, Howie got down, walked over to the railing next to our seats, and proceeded to pretend to play the bongos along with “Particle Man” and “Alphabet of Nations”.  He was dancing and singing and moving to the music.  It was truly a remarkable experience for me and for our family, seeing him up like that.  On our way out the door after your encore, Howie turned to me and said “That was GREAT!!”.

It was more than great.  It was amazing.  So thank you They Might Be Giants.  You allowed our family to have a wonderful experience together, and showed us that it’s ok to push ourselves out of our comfort zone.  Thank you for giving us the ability to enjoy live music as a family again.

Sincerely,

All of Us

“Blue canary in the outlet by the light switch
who watches over you
make a little birdhouse in your soul
Not to put too fine a point on it:
say I’m the only bee in your bonnet
make a little birdhouse in your soul”
– They Might Be Giants

I had an interesting conversation this afternoon with Gerry.  He’s my oldest, and at “almost eight years old” he is wise and emotional beyond his years.  Today, he was already in a mood when he came home from school, and 15 minutes later he was sitting in front of me with tears in his eyes.  After a few minutes of quiet sobbing and my prodding, he held his hand out to show me what was causing him such pain.

A broken Silly Band.

That’s right, a Silly Band.  Since I had prohibited him from taking them to school, he came home and ran right up to his room to figure out which ones he wanted to trade with his friends later.  And he broke one.  A purple baseball mitt.  This tiny 30 cent rubber band was causing all the angst.

It’s moments like these when you know as a parent you can say one of two things – what you really want to say, and what you really should say.  What I really wanted to say was “Are you kidding?  It’s a rubber band!  And you have 70 more upstairs just like it!”.

But of course, that’s not what I said.  I told him I was sorry it broke, I knew it was special to him, but we should focus on the fact that he still had many more to trade and we could replace this one if we needed to.  I told him we could look at it as if the glass was “half full” and not “half empty”.

I could tell that this expression, while new to him, was intriguing, since he had just started studying fractions at school.  I explained to him that it meant we could think about the situation one of two ways – focusing on the negative part that one of his Silly Bands was broken, or we could look at the bright side, which was there was a whole bag full of them still upstairs, and I bet we could find another special one in there to trade.

I realized as I was saying these words to him that it was good advice for my own daily life.  So many days I only see the downside of things – the tantrums, the difficulties dealing with Howie’s behavior, the physical and mental exhaustion that ends every day.  When you’re stuck in the muck of the minute-to-minute struggles of parenthood, it’s hard to step outside your own head and see how good things are.  We have three amazing young boys who make us laugh everyday.  They are happy and healthy and enjoy being together (well, as much as three brothers can).  Our kids are well liked and other kids (and their parents) want to be their friends.  When looking at the big picture, I can’t really ask for more than that.

I looked at Gerry and he was already getting a smile on his face.  “Hey,” he said, “Maybe I can trade the broken one for free like my friend did when his Silly Band broke!”  He ran upstairs to put the broken one back in the bag with the other 70 ones.

I turned my attention back to Howie and Lewis.  They were taking turns driving Hot Wheels cars down a track that the kids had put together earlier.  All three kids were happy and content at the same time.  For a brief moment, this glass was all the way full.

Some things in life are bad…They can really make you mad…Other things just make you swear and curse.

When you’re chewing on life’s gristle, Don’t grumble, give a whistle. And this’ll help things turn out for the best.

And…Always look on the bright side of life” – Monty Python

“Howie, what do you want to be when you grow up?”

I turned around to the bed where Gerry and Howie were laying before bedtime.  Our nightly routine after showers is Howie watches “The Backyardigans” in my bed and Gerry reads his library book in his room while Tim reads stories to Lewis and puts him to sleep.  Tonight, Gerry was reading his book in bed next to Howie.  He looked up from his book and asked the question again.

“Howie, what do you want to be when you grow up?”

“A race car driver”, answered Howie.  A pause and then “What do you want to be when you grow up Gerry?”

“A professional baseball player, of course”, answered Gerry.

I had to turn around at this moment to bite my lip.  As parents, we all think to the future, wondering what kind of people our kids will become and what great things they will do in their lives.   But if you had asked me six months ago if I could have envisioned Howie becoming a race car driver – a kid who had a hard time with the loud noises at the Monster Truck races at age 2 – I would have said no way.  And if you had asked me three months ago if I could have imagined that Gerry and Howie would be having a conversation about their future lives, I would have laughed, considering this kind of back and forth social discussion was foreign to Howie.

This ever-so-simple exchange between two brothers was an indication of just how far Howie had come with all his hard work.  It was a reminder to me that I needed to focus on all his accomplishments in this short amount of time, and not dwell on the tough work  that still needed to be done.  In his mind, there was no reason why he couldn’t be a race car driver when he was older.  With the right help and supports, he could be that and so much more.

I turned back around and complimented them both on their excellent future career choices.  If you’re looking for me in 15 years, you can find me splitting my time between Fenway Park and the speedway in Loudon, NH.

“Mamas don’t let your babies grow up to be cowboys.
‘Cos they’ll never stay home and they’re always alone.
Even with someone they love.” – Waylon Jennings

Remember back in high school when every family member, friend, neighbor would ask you constantly what college you were going to?  And then once you were at that college, those same family members, friends and neighbors would quiz you about what your major was going to be and what you were going to do with that degree after college?  I remember feeling so annoyed at repeating myself – feeling like I just wanted to wear a sign saying “University of Vermont, Geography Major (no, not Geology), and I plan to fold a lot of maps”.

That’s how I felt yesterday as I spent yet another two hours of my day on the phone with various OT clinics, trying to get some information on getting Howie evaluated for his sensory issues, and when we could start treatment.  He’s getting OT services through his IEP at school but his OT there feels like he needs additional work for deep pressure and movement regulation – stuff he just can’t get at school.

For what felt like the 1,000th time,  I went through our whole story.  Yes, he was evaluated by Early Intervention at age two, didn’t qualify for any direct services under their criteria but was picked up under “clinical judgement” for his sensory and feeding problems.  Yes, we had OT every other week for an hour for 6 months until he turned three, and was turned over to the school system.  No, he still wasn’t eligible for any direct services there either even though his “sensory profile” showed a need for extra help, but was placed in an integrated classroom for preschool where he received accommodations just because of the room and teacher he had.  It wasn’t until his PDD-NOS diagnosis that he was eligible for additional school services, and was picked up for school based OT services.  And Yes, I’m calling you because we need more – more home support, more information on helping his body regulation, just…more.

And just as I had repeated my story for the 1,000th time, I got the same response back for the 1,000th time.  Oh yes, we can help him.  We have a sensory gym, one-on-one OT services, feeding therapies, you name it.  But did I mention we have a large waiting list for treatment?  Did I mention that we could get you in for an evaluation, but the cost is $900 and we don’t take your insurance (or any insurance at all)?  Oh, and did I mention that we’re 45 mins away, and that you’d have to schlep all your kids in the car back and forth to a one hour appointment once a week?  And did I mention that it might not even help?

I hung up the phone with the last clinic feeling utterly frustrated.  It shouldn’t be this hard to get my little guy what he needs.  And it shouldn’t have to be at the expense of my other kids.  You like to think you’d go wherever, spend whatever if you know it would help your child.  But the reality is, it doesn’t always work that way.

Just as I was about to call one of the clinics back to set up an appointment, I got a call back from Howie’s OT from early intervention.  I had called her to ask for referrals or names of clinics that she would recommend for him, knowing his needs.  After talking for a while, she mentioned that she does home based OT work in the evening hours, if we were interested in that.  It was like a light had gone on in my dark world.  Home based?  Working on the specific problems we had at home within his own space and in the environment that triggers the sensory meltdowns?  Why had I not thought of that before, and why had no one mentioned that to me as a possibility?  It made so much sense, especially to do it with someone he knows already.

I’m still in the process of working this out, making sure it’s the right path for us.  But all it took was one person to bring me out of frustration and show me that there’s another path.  And that makes all the difference.

“Everyday is a winding road
I get a little bit closer
Everyday is a faded sign
I get a little bit closer to feeling fine” – Sheryl Crow

On this Mother’s Day eve, I am sitting with Gerry as he watches “Star Wars” for the first time.  As with all holidays, it’s hard not to take this moment to reflect back on the past year since last Mother’s Day.  Seeing as I am distracted by “the Force” and by looking over at Gerry’s face every 5 minutes to make sure he’s not too scared, I’m reduced to writing this as a list.

- I’ve gone from having two boys and a little baby to having three full fledged boys in the house.  There is no “baby” Lewis anymore – now, at 18 months, he’s almost as big as Howie and just as strong.  He sits on Gerry’s lap for a book, he runs screaming with laughter through the house with Howie, and climbs on to the windowsill yelling “Dada Dada!” when Tim’s truck pulls into the driveway.  Best of all, he finally said “Mama”.  It wasn’t to my face, but to others when I left the room.  I’ll take it.

- My vocabulary has expanded in ways that I never expected, and in some ways wish it hadn’t.  I am now intimately familiar with acronyms like “IEP”, “OT” and “ASD”, and with words like “sensory integration disorder”, “stimming”, “proprioceptive”, “perseverate”, “weighted blankets” and “autism”.  However, the more I understand these words, the more I understand Howie.  And I wouldn’t trade that knowledge for anything.

-In this year I have strengthened the incredible friendships I had before, and made some amazing new friends.  At a time when I needed my friends the most, they were there for me and a few went above and beyond the call of duty.  My new friends have come to me through my journey with Howie, and I have come to value their advice, commentary and sense of humor.  We have come to this common place by different paths, but our shared goal is to make our kids the best they can be.  Without them, I would be lost.

-More than ever, I have become acutely aware of how lucky I am to live where I do.   I live in a state that values its citizens by covering many medical procedures that aren’t available in other places.  I live in a town where people care about one another, look out for each other, and bring in their neighbors’ trash cans when they are away.  I live in a school district that puts their students first, so that I am not fighting tooth and nail for the services that my family needs.

-Maybe it’s because for the first time in 4 years I finally had six hours of straight sleep, but I finally decided to start taking care of me and asking for help from others.  I’m trying to run every morning with a goal of running the Flutie Foundation 5K in October, and without my friend pushing me to run to “just one more mailbox”, I’d probably still be on the couch.  I’m taking the 2 hours I get in the middle of the day while Lewis is napping to just relax, read, write and play Facebook Scrabble, and not run around the house obsessing over all the things I can’t accomplish quietly enough to keep Lewis sleeping.  I’m trying to make sure I get out of the house with some friends at least once a month for dinner, drinks and conversation that doesn’t revolve around the last time someone pooped.  And for the first time ever, I’m hiring a babysitter for a couple hours a week in the summer with the hopes that someday Tim and I might actually get out of the house together on a regular basis.

- But most importantly, I have learned a lot about me as a person and a mother.   I have finally made peace with the fact that I am not, and will never be, the world’s most perfect mom.  In fact, I have moments when I’m not sure the title of “world’s most average mother” would fit.   I have lost permission slips, forgotten appointments, sent a certain 2nd grader to school with an expired snack, yelled, screamed, and threatened to just walk away. There are some moments in the day when even “Calgon” couldn’t help take me away.  But I know that at the end of the day I am the “world’s best mom that I can be”.  I will be there for my kids in whatever way needed and will fight for what they need to the end.

Speaking of that, it’s time to say goodnight to Gerry.  We turned the movie off after an hour when I noticed him staring wide-eyed at the TV on the edge of the couch.  It’s a lot of movie for a kid who, at age four, cried at the movie “Cars” because he was sad that Lightening McQueen didn’t get to say goodbye to Mater.  We’ll watch the rest tomorrow night as way to end to Mother’s Day together.

Happy Mother’s Day to me and all the other mothers, mothers-to-be and mothers-should-be out there.

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