A Letter to My Thirteen-Year-Old Self, Twenty-Two Years Later...

September 28, 1989

Dear Me,

You will get through this.

You probably don't believe me right now.  You are thirteen years old, in a bed in the PICU, looking around and hearing sounds as you slip into and out of consciousness, wondering where you are and how you got here.  You ask your mom, "Why can't I feel my legs?" and hear her say to you, "Honey, I don't know," not realizing that her response is less about her own misunderstanding of your question and more about the fact that she doesn't quite know how to tell you the truth just yet.  You don't realize the challenges that you are about to face in the days, weeks, months, and years that will come, and so you sleep.  You need your rest and your energy to shore up for what's ahead of you.

And then you wake up.  The following couple of weeks will be ones of chaos, full of people trying to figure out what went wrong and how to fix it.  Your friends and family will be the best distraction.  They will cheer you up and make you laugh at a time when, in retrospect, you will accept was the most mournful state of your young life.  They are your gift right now as the next steps are planned out for you, and they are the reason that you have hope that everything will be okay.

The months of rehab in a place that's far away from your home, your friends, and your family are hard, but you will do what you can to get through and move on.  You will meet other patients who are in some ways just like you, and in other ways, worlds apart.  Some are hopeful, and some are not.  Some are convinced that things will someday go back to the way they were, and some who accept that this may be their new reality.  Learn from them - their stories and journeys may be vastly different from the one you have experienced, or what you believe will be your own fate, but all of you have a common bond that people outside of your little club can never possibly comprehend.  

In addition to your family, you will also meet doctors, nurses, and therapists who help you to see that your life will go on.  It may look like nothing you had ever imagined for yourself in your first years here on earth, but I promise you, it will be just as good.  Trust them - they know what they are talking about.  Some will even become your friends and mentors and will see you through, well beyond this moment and into a time when together you can celebrate how far you've come.

And then there's the outside world.  You will leave the safe bubble that is rehab and emerge into a new place that, on the surface, looks a great deal like the one you left behind - and yet, completely different.  What will frustrate you is that it seems like you are the only one who sees the differences, because they are subtle.  It will be a world full of obstacles, both physical and emotional.  There will be some that the world places in front of you by way of stairs into buildings with no ramp in site, or a bathroom stall that's just a bit too tight.  Some very well-meaning people will tell you, "Oh, I'll just help you up the stairs or into that bathroom," but it's not the same.  There will be people - even those who love you the most -  who place expectations on you to be the person you were before, even though it's impossible.  They may say, "I know you will walk again," but their wishes for you are not as strong as what reality may have in store for you.  And there will be the thoughts that come from within, saying that this isn't the way things should be, and if they aren't the way they should be, then why bother?  

Before you listen to all those other voices, stop and think.  Those people who are pushing you to do things you know you can't do are doing it because they too are grieving your loss right along with you.  And those thoughts that you are mulling when you can't fall asleep at night?  While they are valid, they are by no means a reason to give up. 

There will always be times when life is tough as you go through the growing pains that come with any change.  These growing pains hurt, both physically and emotionally.  You may think that if you pretend that nothing's different, or if you glue a smile to your face, it will mean that all of it will go away.  But don't act like it doesn't exist, because this will only get you so far - believe me.  Instead, trust that the people with whom you choose to connect are going to understand.  Those who can't handle it, won't.  Those who can will become your safety net as you navigate this uncharted territory, and that safety net will grow even wider as time goes by.  

You may have always had a plan of how things were supposed to be.  This plan has changed, to be certain.  But you can still do all the things you ever wanted to do, just in you own way.…in your own time.  You'll put on that cute dress and go to those high school dances.  You may just have to dance a bit differently.  You'll learn - and LOVE - to drive, and all the freedom that comes with it.  You'll just do it with hand controls in a car that has a bit more room for your chair.  You will head off to college.  It may not be at a place that has the most gorgeous, historical 200-year-old buildings, with all those beautiful staircases and tricky architecture, but it will be accessible to you, and that will make it the best fit for you.  You will graduate, get a job doing what you love, and you will be great at it - despite your chair.  Somewhere in there, you'll meet a boy who adores you, and you will feel the same.  You'll tackle the world together, "like peas and carrots," going together so perfectly.  You will marry him, and together you'll make the world a lot brighter by welcoming two little girls to the mix.  

Your girls will notice your chair, and look right past it.  To them, you are Mommy, and the demands they place on you will not make space for any limitations you may have.  Again, there will be a big period of adjustment with this, but that's okay.  You will do anything for them - even move the world.  They say your child is your mirror, and so you will look at them: compassionate, flexible, happy, and STRONG.  They will be resilient because of you.  They will always - first and foremost - see the good in people because of you.  They will see that, despite the challenges we all face in our daily lives - and in spite of the fact that we can't always control what comes our way - we all have in us the ability to bounce back and reshape things.

Fast-forward, twenty-two years:  

Here you are, at 35 years old.  You did not, for one second, choose to go through the added struggles that your injury handed you, nor would you wish these struggles on your own worst enemy.  But you can, in some way, look at the perspective you have been "gifted" through your challenges as something of value.  You are also wise enough to know that, while things are never really going to be "perfect"  for you, they will usually turn out just fine - and sometimes, they will be unbelievably amazing.

Trust me.  I am a wise woman.  I know these things.



She starts Kindergarten tomorrow...

Some other firsts... bath, pushing up, and smiling.  It seems like just yesterday!

...and I am anxious.  Excited, but anxious.  Amazed, but anxious.  And really, just anxious.  But she is just excited, and so I need to take her lead and put on a brave face because that's what Mommies do.  Wish both of us luck (I think I need it more than her)...


So Perfect Then; Still Perfect Now...


Five years.  When you're little, it seems to take FOREVER for five years to pass.  But when you're a parent, they somehow fly by in the blink of an eye.  We were blessed five years ago today with the arrival of our beautiful daughter, C.  She kept us on our toes that morning with a very dicey delivery, and continues to keep us on our toes today with her feisty free-spiritedness, her questions and views about the world around her, and her infectious (and occasionally, mischievous) smile.  Happy, happy birthday, Sweet Pea.  You made a Mommy and Daddy out of us - what a gift that has turned out to be!


Tuesday Tunes...

The song that's starting off my playlist right now is "Did You Ever Look So Nice?" by The Samples.  It's one that I've loved ever since my cousin Mikey played it for me way back when I was in high school, driving him somewhere in our old Jeep Cherokee.  Over the years, I have listened to the band quite a bit, but this sone reminds my absolute favorite.  There's something about it that makes me instantly happy - and these days, it makes me think about my girls.  Enjoy!

My Daughter, the ROCKSTAR...

BIG milestone for Miss C this evening!  It's the day before her fifth birthday, and she has FINALLY willingly put her head under the water!  Yes, you read that correctly - the girl who did all that swim team stuff this summer has fought this challenge the entire time.  Water is one of her "things" (you know, those frustrating little triggers that can throw off a perfectly good situation), which is what makes this so huge.  If you happen to see a beam of light shooting up into the sky from somewhere in the DC metro area tonight, it is likely coming from C's smile of pride, which is about a mile wide... :)


Downsides and Silver Linings...

"Just try and make me take a nap, Mommy."

Sooo....  C (and we) were loving her OT camp so much that we added the last week.  With 15 hours of OT-based fun vs. just 2 hours of regular therapy at her usual appointments, this was kind of a no-brainer!  The downside of this is, of course, it's yet another week of disruption in Miss M's schedule, which has completely thrown off her nap.  Here she is, bright-eyed and bushy-tailed when she should be cramming in that 1 1/2 hours of sleep that she needed and frankly, I was willing to sell my soul for this afternoon.  Oh well, at least she's cute, right?!


It's All a Matter of Perspective...

Happy 4th of July at the Bay!

Wow, it's been a busy summer around here (hence the lack of recent posts!).  I feel like school just got out, and yet here we are, almost time to get ready for school.  In addition to a couple trips to my parents' house on the Chesapeake Bay (aka my favorite place in the world!), we've had a month-and-a-half of junior tennis, "pre-team" swimming, kindergarten & OT-themed camps for C, our usual OT appointments when C hasn't been in OT camp, and lots of fun with our babysitter for M while I've been shuttling C to and from all of her activities.  I feel like I've lived in my car for weeks now, and although I totally balked at last year's purchase of our first - GAG! - Sienna minivan, I have been really glad we went that route (especially since I told my husband the only way I would do it was if we got the nicest one out there) for the simple fact that carpool has been far more pleasant experience with a few necessary luxuries thrown in (Remote starter to keep the engine and AC running while I run into camp for pick-up in this disgusting DC-metro-area heat!  A DVD player to keep the girls awake!  Sirius satellite radio to keep ME awake!).  When I used to think about a luxury car, I thought "BMW convertible."  Now I think "power doors."  My, how times have changed...  But I digress.

Waiting for her first "race" at the mini-meet - kickboard!

Trucking along, all by herself, in the "big" pool - huge step for C!

At the swim banquet, so proud of her first swimming trophy!

Even though I feel like the season is flying by, all the shuttling around and tight schedules have been worth it.  Both girls really do best with some structure to their days, so that's been great.  C in particular has had some great new experiences through swimming and tennis, got to know her new school at kindergarten camp (yes, we have decided to move forward with our plan - more on that soon!), and is really enjoying OT camp (we have one more week left).  It's held at a school that is affiliated with the center where she goes for her regular OT appointments and runs from 12:30-3:30 every afternoon.  Each day is planned with each child's goals in mind, and includes activities in their two sensory gyms (an example and explanation of a sensory gym can be found here), fine motor games and projects in the classroom, and lots of work on social skills through play.  We get a daily report of progress on the goals that her therapists and we have set for her.  C has made some great new friends who are where she is in terms of her development.  They're all basically typical kids who happen to have a few quirks or motor challenges that they are working through together, which is wonderful.

All school year, we worked hard to get C ready for kindergarten while also digesting her diagnosis.  As I have mentioned before, her teachers were amazing, but the year did have its ups and downs.  I know that they loved C and were glad she was part of the classroom mix.  They would have done (and did!) anything to help her be successful, but I know that she was one of the more challenging kids in the class from time to time.  Some of the day-to-day stuff was harder for her than others, which was to be expected as we continued to shake out the idiosyncrasies of her SPD diagnosis.  She fit in, and yet she stood out, which is always hard for a parent to watch.  C loved her school and her teachers, but at the end of the day, she came home exhausted from working so hard to do what she was supposed to do and helping herself give her body what she needed in terms of input (and sometimes doing so in inappropriate ways that got her into trouble).

What a difference being part of a group where everyone is a bit more like C has made.  When I pick her up from camp, I hear things like, "C adds such a great dynamic to our group!" and "Her enthusiasm is contagious to the other kids!" and "She is doing an amazing job of modeling appropriate social skills/persistance/group participation!" Here, her strengths as well as her quirks are celebrated.  She gets what she needs to help regulate her senses, and is happy and balanced when I see her at the end of the camp day.

It makes my husband and me so proud.  She is working hard and is fitting in.  I don't ever want to change C, but I am sure that any of you readers out there who have been where we are can appreciate how wonderful it is to see your kid as just one of the group, rather than the anomaly.  As the title of this post states, I guess it's all a matter of perspective, and this summer is exactly what C - and I - needed.


Our own little Maria Sharapova/Dara Torres in the making...

C and her friends, working on their backhand stance

That's my girl!

Last week, C started tennis and mini-team swim lessons at our neighborhood club.  We had originally planned on it just being tennis, but then C surprised us by (very uncharacteristically) declaring that she wanted to take swimming lessons, put her face under the water, and blow bubbles.  Um, TWIST MY ARM, PLEASE!  We have been working through a pretty irrational fear of the water for some time now, so this definitely caught us off-guard, but we went with it and so far, both lessons have been great!

I have a neighborhood girl coming to our house around 9 am, three mornings a week, so that M can hang out here and get some one-on-one attention of her own while I take C up the street.  We have tennis first, and then walk over from the courts to the pool for swim practice.  I am so glad she is giving tennis a try.  Not only is it a great life-long sport, but it is such great practice for her coordination, motor planning, and crossing her midline.  Her attention span can be short at times during practice, but we are working on this too by talking about how important it is to stick with something and follow through.  

As for swimming, my husband and I couldn't be more thrilled.  Learning this skill is so important from a safety perspective, but C has really shied away from it up until now.  My husband is a swimmer - he not only swam at Georgetown during his college years, but he also used to coach summer and elite swimming - so he could absolutely teach C, but she and he can butt heads occasionally.  Like lots of kids with SPD, having water poured over her head or not feeling like she has control of her surroundings when in the water has historically been a real issue for her.  Having someone outside the family working with her has proven to be the key here:  in her first week, she has floated on her back (with support), blown bubbles, and (sort of) put her head under water.  Learning to use her kickboard, practicing pool safety, and keeping her focus through the entire half-hour lesson is just icing on the cake.  We'll take it!!!  

I decided to clue her swim coaches in on some of what we are working on from a therapeutic perspective - just a general "Just in case you feel like it's taking a bit for C to put the pieces together, here's why..." kind of email that proved to be a great decision.  The head coach has personally been working with her group every day, and has taken a special interest in helping C experience success.  All her coaches are terrific and very enthusiastic.  We could not have asked for more.  

We are off to a great (albeit busy!) Summer - no wonder it's my favorite season of the year!


What We're Working On: Tackling the Swingset

Wow - time flies!  It's been a few very full weeks since I've written - we've wrapped up preschool for C, been to my parents' house on the Bay for Memorial Day, and are finally settling into a bit of a relaxed Summer routine.  The girls are loving sleeping until they feel like getting up (my husband and I are loving that, too!) and days filled with playing with friends, hitting the pool, and getting outside as much as possible.

We're taking all that being outside has to offer as an opportunity to work on some of the play skills that many kids take for granted.  Our own back yard is the perfect little sensory gym!  One of the things that is a little tricky for C is swinging on the swing set by herself.  She loves to swing, but it's hard for her to figure out what to do with her legs and the rest of her body in order to get going and stay moving.  The rhythm of "Push off the ground with my legs, extend them upwards while swinging up, then bend and pump them back underneath while swinging back, all-the-while stablizing my core so that I don't fall backward or forward, and repeat..." takes coordination that she doesn't always have quite yet, but she's definitely trying!


To Tell, Or Not To Tell...

...That is the question.  C's last year of preschool is rapidly coming to a close.  The next couple weeks are a whirlwind of activity for her class, from the family picnic at a local park today, to the last Manners Day (a day held once a month during which the kids have a special "fancy" luncheon where they wear their Sunday best and practice their table manners), to the class circus on Friday.  All of this leads up to the end-of-year program on the 25th, and then my baby is done with preschool!

C's first and last days of 2's preschool - 2008-2009

I can't believe how quickly time has flown and that we are now preparing for Kindergarten at a new school.  C's current preschool is this small, supportive, protective little bubble where we have spent the past three years (and will be spending three more, as M starts preschool this Fall!).  This year, in particular, has been challenging yet amazing.  C has learned so much.  Her teachers have been incredible - willing to try anything to support her and her growth.  We have had an open dialogue from the beginning, which has really helped.  Prior to her first day, I had a conversation with her teachers to say, "We think something is up.  We don't want to put a name on it, but we do want you to watch and let us know what you see.  We will move forward from there."  Three weeks into school, we were already discussing possibilities, and C was evaluated in October, with her diagnosis coming in early November.   We are all on the same page (or at least we try to be), and they have allowed their classroom to be a bit of a laboratory for us as we have tried strategies and sensory tools to help C regulate herself during the school day.  In theory, this is how it should be for every child, in every school.  But as a teacher myself, I know that this is not necessarily the case.  We know we have been lucky...which is what is making me so anxious for next year.

C's first day of 3's pre-school and the end-of-year picnic - 2009-2010

C, heading to the first day of 4's preschool (and M wishing she was, too!) - 2010

C will be heading to one of our local Catholic schools in the Fall.  It happens to be the one where I went as a child, and where we have lots of friends.  The school is an incredibly warm, welcoming environment that emphasizes not only strong academics, but also has a religious component that, as an interfaith family in which the kids are being raised Catholic, we need.  Our county school system is in the top 3% nationally, so our decision was also based on the criteria that whatever private school we were looking at needed to compete with those standards, and our new school seems to fit the bill, for the most part.  They have support services and resource teachers, and from what I understand, can help us access additional county services should they become necessary (like for speech - I am thinking we many have some articulation issues, which is common for kids with motor issues).

C doesn't currently receive OT in school, as she was only evaluated privately.  The wait was long for a county evaluation, and her issues seemed subtle enough that I was wary that she would ever qualify.  I taught in our county system for 8+ years before having my girls, and saw the challenges that teachers and parents faced in seeing just the right quirk, saying just the right thing, and writing it just the right way so that a student could receive therapeutic services.  The school systems look for that key "educational impact," and with SPD, it's sometimes difficult to pinpoint what that impact is.  They also see SPD most often associated with other diagnoses that are actually recognized by the DSM-IV, and we absolutely did not want to pursue another kind of diagnosis just to obtain services.  We are very fortunate that we can, at least for now, afford C's therapy, and didn't want to place upon her an inaccurate label that could follow her forever.

So, you ask, what's the big deal?  Her new school sounds great, and definitely produces some truly well-rounded children who matriculate to some of the best Catholic, private, and public magnet high schools in our area.  The vibe that we have gotten from the staff is that they are prepared to handle whatever comes their way.  We also have several friends whose children are also receiving private OT services and speech therapy who have assured us that our new school will be supportive.

But... I have had lots of people around me advise us to keep C's challenges on the down-low, at least for a little while.  Some of them have much older kids (who are now adults) who had to navigate the Catholic school system at a time when support for kids who didn't "fit the mold" was at a minimum, at best.  They struggled to get their children's most basic needs met, but believed a Catholic school education was something that ALL children deserved, so they fought for it.  My mom was one of those people, when I sustained my spinal-cord injury at 13 and the same school that C will be attending was nervous about letting me come back and fully participate because the school wasn't completely accessible (today, it is).

Other friends of ours have kids in our county system who felt like their kids' issues were something that could be addressed privately and wouldn't have a huge impact in the classroom, so they didn't feel the need to share that information with their schools.  And finally, I have colleagues who rightly believe that our county system is very equipped to support all students, so why would we take a chance on something that might not be the best fit for a kid like C, or go through the hassle of coordinating her Catholic school schedule with any county support she might eventually qualify for?  There's this voice inside me that says:

"I see their perspective.  I don't want C to be labeled from Day One.  I don't want them to think that they have her all figured out just based on what I tell them.  I want them to get to know her for themselves, and then act accordingly.  I want her to have access to all the resources she might need."  

It makes me want to keep quiet for a bit and see what comes of her first few weeks - just as we did last year.  After all, it worked then - why wouldn't it work now?

But then there's this other voice in my head - the one who is a teacher who hated when she knew there was a missing piece of the puzzle with a student, but wasn't given all the information from their family; a person with a very obvious physical disability that she cannot hide (not that she wants to); and a parent who has invested a great deal of energy over the past year trying to figure out her child and putting in place some accommodations that she relies on.  That voice is saying something very different:

"Tell them.  Let them know what a great kid she is, but that she may need a little extra help.  She's wiggly because she is trying to pay attention - not the opposite.  Help C get off on the right foot on the very first day by being equipped with all the tools she is learning to use."

If my child was nearsighted, would I send her to school without her glasses?  No.  If she needed crutches or a wheelchair to get around, would I drop her off at the front door and wish her the best of luck getting inside the building?  Of course not.  So why is this such a dilemma for me?

To add to our confusion, there is also the option of having C wait another year to start at her new school.  She is ready academically, her teachers say, and with continued OT support, she should do just fine.  But she is immature, she does occasionally struggle socially, and she has a late birthday.  Should we have her do Kindergarten at our public school for a year, and then transition her?  Do we send her to another pre-K program?  Do we just stick with our plan and figure it out as we go?  Ugh.

I don't know which voice to listen to, and am nervous I will make the wrong decision.  How do I advocate for my child when I am still trying to understand myself?  What should I do once we make our decision?  These are the questions that we are trying to answer over the next few weeks.  I just want to do the right thing...


"Where were you?"

Our girl C at our family house on the Chesapeake Bay - Fourth of July, 2007

September 11, 2001.

Everything changed that day.  We lost family members, loved ones, co-workers...and our innocence.

Living here in the DC metro area, it was a particularly horrific day.  I had lots of my immediate family and friends who were working downtown when the plane hit the Pentagon, as well as friends who lived and worked in the financial district in NYC.  My now-husband was travelling by air.  My mother was on stand-by to head in to her job as a burn and trauma nurse at the Washington Hospital Center, which was preparing to receive victims.  I myself was in North Bethesda, MD, teaching my classroom full of bright-eyed first-graders - many of whom had family working in DC, the Pentagon, or flying for work - about, ironically, the attributes of a pentagon vs. a square when the planes hit and rumors began to swirl that there was another on the way.

Today, we have seen Osama bin Laden finally meet his demise.  While he is gone, his message of hatred lives on, and I pray that we as a country can continue to find the strength to stand up to that  evil vitriol.  I find myself looking back on how everything changed that day, almost ten years ago.  And then, I think about my girls.  The world in which they are growing up is a little more wary, a little less safe.  It's a world in which they have to take off their shoes to fly on a plane (imagine what a treat that is for a kid who has SPD!).  They occasionally fall asleep at night and hear the sounds of fighter jets from some of our area's bases running maneuvers in the airspace around DC.  There are places around our city where we simply are no longer allowed to go.  And that makes me sad for them.  But it also gives me resolve to do everything I can to help them have a happy, healthy life.  Whatever I can do to shield them from some of the harsh realities of our world today, I will do.  And even more importantly, I will teach them that above all, we must love one another.

They ARE young.  They DESERVE their innocence.  If just for a little while longer.


An Update...

Our first day was a success!  C put on her belt right as she walked in the door and wore it throughout free play at the beginning of the day.  Her usual M.O. at this time is flitting from one activity to another, never really sticking with anything, having difficulty figuring out exactly how to join in her friends' play, and leaving a mess in her wake.  Today, she sat on the rug and quietly played with a circus set with one of her friends FOR TWENTY WHOLE MINUTES.  She stuck with it, engaged and happy.

C took her belt off when it was time to head outside, but when they came back in for circle time, she put it back on.  Usually, this thirty minutes or so is extremely challenging for her.  This is when the class listens to stories, has show and tell, learns new things, and reviews directions for the activity that follows the lesson.  She is wiggly and fidgety, and this can sometimes be distracting for her classmates and teachers.  She often chooses to get her fidget toy (which is only moderately successful for her these days), or sits in a rocking chair or bean bag chair alongside the group, in case she needs to move a bit.  Sitting still and quiet in the circle is usually just too much for her for that length of time.

Today, C sat WITH THE GROUP ON THE RUG.  She didn't need a rocking chair or fidget toy.  She was still a bit wiggly, but she sat.  Just like everyone else.  And when it came time to complete the activity for the lesson, she asked if she could go first and chose the most challenging option within the activity.  She completed the activity relatively independently, and stuck with it.

Her teachers seemed (cautiously) thrilled.  Could we have figured out another piece of the puzzle?  We don't know what tomorrow will bring.  But for today, we will celebrate this small success, and hope that it continues tomorrow.

Late this afternoon, one of my dear friends (who has twins in C's class and are her good friends), sent me a message.  At pick-up today, her son told her, "C wore a new PINK belt at school today so that she won't be so fidgety.  I guess God makes people different and perfect like C, right Mom?"  Up until that moment, I hadn't really pressed C to find out how she felt about having her belt at school.  I didn't want to make too big a deal out of it, just in case she was still trying to figure that out.  But when I told her what her friend told his mom, she got a big smile and said, "Really?  He liked it?"  It was the biggest gift that we could have received today - the gift of acceptance.  

Putting Faith in a Little Miracle...

Our latest OT purchase...  Behold, the Miracle Belt!

...Belt, that is.  C headed to school today armed with her new Miracle Belt.  It's a 3-pound weighted belt that she will (hopefully) wear in 30-minutes-on, 30-minutes off cycles during school.  The purpose of the belt is to help calm her system and give her joints some extra input about where her body is in space (which will help with coordination and hopefully help her to be a bit less wiggly and fidgety).  We've been experimenting with weighted items in OT, and decided that the belt was the way to go, since it moves with her rather than being something that she could only use while seated (like a weighted lap pad, for example).

In OT, C's therapist has been trying a weighted belt with her, and almost immediately saw an improvement in her coordination.  She seemed just a bit more in control of her body so that she could concentrate on working those muscles that need to be developed, as well as her motor planning.  On the very first trial, the OT had C jumping on a trampoline (something that she does often at home and at therapy).  Usually, C would be flailing all over the place on the trampoline, and would often fall.  With the belt, however, she was able to jump straight up and down in a very controlled, consistent manner for the very first time.  We took that as a good sign.  After a few more successful belt sessions while working on different activities, we decided to buy one for C to use at school and at home.  

One of my girlie-girls getting ready for the pool in 
Marco Island, FL this past February

C is quite the girlie-girl (M is, too).  Getting her to wear something that didn't look cute, or was patterned with "boy stuff" (as she calls it), would have been impossible.  I was thrilled to find that the Miracle Belt company sells colored covers for the belt, and I snatched up a pink on for C.  She was actually excited when it arrived in the mail yesterday, and enthusiastically showed it to her teachers at drop-off this morning.  She is going to use it first-thing this morning during free play, take it off when they go outside, and then wear it again for circle time (which is a time she struggles with).  She also told her teacher she wanted to wear it at lunch.  I'm not sure if she will follow through, but I was really proud to see her using some of her self-advocacy skills.  

My fingers are crossed that it's actually effective.  The Miracle Belt website claims that, "Within minutes of wearing the Miracle Belt, your child will feel more grounded, focused, and secure!"  That seems like a tall order for a little belt to fill, but I am cautiously optimistic that this will help C better manage her senses and feel more successful during the school day.  I guess we will have to wait until 1 pm - pick-up time! - to find out how things went.  We'll keep everyone updated...


Tuesday Tunes...

Me and my hubby (aka the former DMB groupie)

This week, we have a bit of (somewhat) classic Dave Matthews Band.  My cute hubby prides himself on owning bootlegs of the band way back in the day (circa 1993-94), before they had hit the local Tower Records (R.I.P., Tower!).  He got my hooked on the band when we were in college and used to send me mix tapes (YES, TAPES - HA!) that included tons of rare versions of their songs.  Amazingly, DMB is one of those bands that has managed to stay current after all these years, and I especially love that fact because it makes me forget that I am driving my kids around in a minivan while rocking out to them.

Naturally, the girls listen to Dave.  Unlike Jimmy Buffett (see last week's Tuesday Tunes...), they don't necessarily have their favorite songs, but they don't scream at me to turn it off, so I'll take that as a big thumbs-up of approval.  M, in particular, is known for telling me, "No, no, no, Mommy. Change song," when she isn't a fan, so I'll take the lack of raptor-like screeching as a positive sign!  

The song that's playing right now is "Stay (Wasting Time)," by DMB.  It's a personal favorite because it has followed me since my college days and hasn't gotten old yet.  I love how it reminds me not only of my husband, but also to enjoy the moment, rather than moving on to the next at lightning speed.  Sometimes we all forget to do that...

My favorite part of the song comes towards the end.  It says:

"Wasting time...
I shall miss this thing when it all rolls by.  
What a day... 
I wanna stay, stay, stay, stay, stay for awhile..."

So simple, and kind of cheesy, but a favorite, nonetheless!  Happy Tuesday, readers!


What we're working on: Bilateral Coordination & Motor Planning

Bilateral coordination is being able to use both sides of your body at the same time in order to perform a task.  It's an important skill that is connected to many different activities that C is regularly expected to do, including cutting, writing, and drawing.  Being able to cross the midline of the body (the ability to reach across the imaginary middle line of your body to the other side, using your arms or legs) is also part of bilateral coordination - and is something that is challenging for C.  We are trying to give her lots of opportunities to practice using both sides of her body, as well as encourage her to practice crossing her midline.

C loves her Octopaddles and scooter!

Using both arms simultaneously to push herself...

Perfect for bilateral coordination and motor planning...

Motor planning is understanding the steps necessary to complete a task, organizing yourself and your body, and then following through.  People use this skill constantly throughout their daily lives, whether they are playing sports, doing school work, or even tying their shoes.  For most people, these steps happen in their brain so quickly that you don't even realize they are processing them.  They are just able to do whatever it is they want to do.  As for C, she often knows exactly what she wants her body to do, but struggles putting the steps together to make it happen in a timely manner.  The result is that she appears somewhat clumsy and uncoordinated.  We are working on this, too.

Puzzles are great practice for both bilateral coordination AND motor planning, too!
(So is playing with princesses - that's what M is up to... :)  )

Using one hand to stabilize herself while fitting the puzzle piece with the other...

Finished product with Daddy!

Bilateral coordination and motor planning are two areas that C definitely finds challenging, but fortunately, there are tons of ways to help her practice and have fun doing it at the same time.  And as for M, whatever we are doing with C can absolutely help her develop these skills, too.  To the girls, it's just play, but these days we try to think about what other benefits can come from their play time.


Tuesday Tunes...

The girls and their wings - October 2010

Music is a big part of my life.  It can get me excited for a night out with friends, cheer me up when I am down, keep me sane when I am driving carpools all day, and make me think about our life's journeys.  You know how a song can come along at just the right moment that it seems to mirror your life, and you find yourself connected to it?  That's what a great song is to me.  Lately, a lot of the songs I have been listening to naturally make me think about my girls, especially C and all the challenges she is working through and overcoming.  She is such a fabulous little girl (well, both of them are!).  I thought it might be fun to share with you readers some of what we are listening to these days - who knows, maybe you'll see yourselves in their lyrics, too!

The song that's playing this week is by Jimmy Buffett - a longtime family favorite.  Every single song he writes has a story or lesson to take away, which is what makes it so much fun to listen to.  As a kid, I remember listening to his tales of adventure, the sand & sea, and the good life.  Jimmy has a way of making you feel at home and a part of whatever action he is singing about.  He's a real, down-to-earth, regular guy who somehow found himself being lucky enough to do what he loves for a living.

When I was in high school, I went to my first Buffett concert, and let me tell you, it was a scene like none other I had ever experienced.  Thousands of people - some dressed up in costumes, some not;  some drunk, some not - were there just to have a good time and step into a kinder, more relaxed, more free-spirited world, if only for a few hours.  In college and beyond, I enjoyed more than a few cocktails at his shows (which took it to a whole other level - hee hee).  And now, I am passing on my Parrothead pride to my daughters as we listen to Radio Margaritaville on XM almost daily.  It's so much fun that they each have favorite songs!

One of my current favorites is the song you hear playing right now is "Wings" by Jimmy Buffett and Wil Kimbrough, which is on Jimmy's album, "Buffett Hotel."  It's a song about flying, your imagination, and following your dreams.  The back story to it is that it was inspired by a trip to St. Barth back in the 70's.  He connected with the island and its locals, and invited some of them onto his boat one night to watch "The Wizard of Oz" - one of the only movies he had on-board at the time.  It was a magical night for some of the kids, especially.  In Jimmy's words:

"I was getting the kids’ reaction to seeing it for the first time (it was probably my 500th), 
when one of them popped up and said, “I can go to Oz anytime I want.” 
“Oh really,” I answered, “How can you do that?” “Because I have a car,” 
he answered. “Really?” I asked. Well, for a ten year old on an island with 
about twenty total cars at that time, I asked him, “Where do you keep this car?” 
He smiled, pointed to the side of his head, and replied “It’s in my brain.” 
I hope you all keep that childish way of figuring out how 
to use the wings you can’t see or the wheels on your feet, 
and I hope you use them often."

I think I would love it no matter what, but its lyrics are especially resonant with me as we are on this journey with our kids.  There's one verse in particular that I think sums up not only what we are going through with C and her SPD, but really about what it means to be a parent:

"...Maybe if you open up your mind
You might learn some things
God only knows what you might find
Floatin’ on those wings
You can try to fly away from all your problems
Well I’m here to say
That ain’t the way to solve them
I can only help you with your wings
That you can’t see

We have wings that we can’t see
We have wheels on our feet
Way up high we’ll be free
On these wings we can’t see..."

It's our job to make sure they are finding their wings and using them in the best way they can.  I hope that one day, my husband and I can look back and see that we've done what we needed to do.  Happy Tuesday, readers!  I hope that you are finding your wings, too! 


The Divine Miss M...

Miss Magoo

...Otherwise known as my other wacky sidekick.  M is our younger daughter.  She is every bit the two-year-old - curious, active, spunky, stubborn.  We love all of it - even the parts that, at times, make me want to pull my hair out!  M adores her big sister C, and the feeling is very mutual.  Both girls are finally at ages where they can appreciate each other as play mates.  Kids this age, and those with SPD in particular, sometimes have a hard time learning those all-important "playground rules," like sharing, taking turns, and using kind words.  It's great that they have each other - there are naturally built-in opportunities for both girls to get more practice with their social skills!

The girlies, kidding around before rainbow fruit for St. Patrick's Day - 2011




WOW.  We have had quite the week around here.  In addition to my husband having to host his team from China at work (translate:  VERY long hours, which translates to "Mommy's on duty pretty much all the time"), we've had various other changes in our routine.  C's seasonal allergies are also in full swing (even though here in the DC metro area, it seems Mother Nature forgot what she is doing because it certainly feels like we've regressed back into Winter), which means that she is on medication, has a runny nose, and just feels not quite like herself.

I have always known in the back of my head that transitions and changes in routine are not my daughter's forte' but I don't think it truly hit me until this week just how much a long to-do list for the week can stress her out, and how much this added therapy (and our rising expectations of her as she gains more skills and confidence in them) is taking a toll on her energy level.  We did all the typical things we do - school, OT, sensory activities at home, etc., but we added three play dates for C (two impromptu, one planned) and one for her little sister M, just for kicks.  I think the non-stop action has been a bit too much for her.  I saw more meltdowns  this week over things that I thought we had mostly conquered than I have in awhile (not throwing ourselves on the ground when we don't want to do something, putting on socks/jackets/clothes with sleeves when it's 40 degrees outside, WEARING PANTS IN FRONT OF COMPANY - you know, the usual...).  Sister was seriously having issues - and I know it was not her fault.

Here's this kid who has been working hard, and we go and bombard her with lots of extra stuff - some totally planned, some totally unavoidable, but extra stuff nonetheless.  I know that eventually we will get to a point in her therapy where she will be better able to roll with the punches, but she is just not there yet, and I/we have to respect that.  I don't mean that we should always skip or avoid over-programming our week because sometimes that's just life and you do need to learn that life isn't always this planned out thin.  But I do think that when we know it's coming, we owe it to our family to prepare ourselves for a more challenging day/week than we would otherwise be facing.  It's only fair to C, and I know for my own sanity, if I keep it in perspective, we will all be much better off.

While I sometimes feel guilty that she takes time every afternoon to just veg out in front of the television, or read her books, or play her Leapster Explorer, I now know that this time is necessary for her.  She works hard at school, at OT, at play dates, at her exercises at home, and downtime is a really important thing that we neglected this week.  I'm already thinking about how we can give all of us a break this weekend.  I think that for me, it just might need to involve some wine and girls' night tonight...  :)


Paper Towels and Other Small Victories...

The bane of my daughter's existence...

One of the things we are working on with C right now is helping her develop self-advocacy skills.  We want her to have the ability to not only know what she needs to help regulate her senses in different situations (like grabbing the stress ball she uses to stay focused during circle time at pre-school), but also to speak up appropriately if something doesn't feel right (rather than having a meltdown or working herself up in anticipation of her needs not being met).  These are good skills for all children to learn, but for kids with SPD, it can be a bit more of a challenge because it's harder for them (and the people around them) to understand what makes them tick, what might set them off, and why they are so sensitive to it in the first place.  Helping C learn what she can do to help herself, and why we are having her do the things we are doing (like special activities and exercises in the morning before she goes to school) is an important part of her therapy - and in little ways, we are beginning to see our efforts pay off.

C has always noticed the sounds around her.  Even when she was a baby, she would stop and stare at the sky, looking for the airplane that no one else could hear quite yet because it was still too far away.  The vacuum used to scare her;  now it just annoys her.  We now know that if we give her a heads-up that we are turning it on, she can prepare herself for it rather than being startled by it.  During C's evaluation, we found out that one of the pieces to her SPD puzzle is that she has auditory hypersensitivity - she's very aware of and can be distracted or irritated by sounds in her environment.  

We are lucky - C's hypersensitivity is much more subtle than it could be.  Some kids have a hard time even leaving their homes because they are literally bombarded and upset by the world and all its non-stop noise.  For the most part, C has a pretty easy time - she just notices the sounds and can be distracted by them  (which can be tricky at school, for obvious reasons).  But places like public restrooms can definitely get under her skin.  She does not like to be startled by the loud automatic toilets and hand dryers.  She has even been known to avoid going to the bathroom until the last minute or have a tantrum and demand that she doesn't need to wash her hands (uh, yeah you do, kiddo).

Well, we had a little "A-ha!" moment while out to dinner with my family this past Friday night.  My sister and I took C to the bathroom just before it was time to head home.  C went into the stall by herself, took care of what she needed to do, and didn't flip out over the flush.  Then, when she came out of the stall, she very calmly turned to my sister and said, "I think I would like to use a paper towel to dry my hands.  I don't like the hand dryer."  No meltdown - no "I'm scared!" before we had even asked her to wash her hands.  She knew what came next, anticipated what was potentially going to upset her, and spoke up politely for herself.

It was a small moment that likely would have gone unnoticed if I wasn't becoming so aware of the way C sees the world.  But for us, it was a big deal.  I gave her a big hug and complimented her several times over the rest of the evening for how well she had handled herself in that situation.  She seemed really proud of herself, too.  I am learning that with SPD, it truly is the little things that can add up to something big...


Welcome to Our Perfectly Imperfect Life...

I've had a blog before.  It was a really fabulous diversion for me - a place where I posted about fun stuff like parenting tips, great finds and bargains, and occasionally something about my life in a wheelchair.  Over time, however, life just got too crazy with buying and selling houses, starting a stationery company with my best friend, my husband wrapping up his Master's in engineering, having a second baby, and so and so on.  My blog became one more thing on my to-do list, and so it fell by the wayside (not unlike a lot of things that all mothers would love to do for themselves and by themselves, if only there were enough hours in the day)!  I haven't written on the old blog in almost two years.

So what, you may be asking, has changed in my life to make time to start "Our Perfectly Imperfect Life..."?  Well, to put it bluntly, nothing has changed, and yet EVERYTHING has changed.  I am still haggard and harried, totally busy, and without enough hours in the day to do all the things I want to do.  Our family life is still a non-stop whirlwind of activity.  All of that's the same.  The one big thing that is different for us is the recent diagnosis of my older daughter, C, as having Sensory Processing Disorder, or SPD.

SPD is a tricky disorder that is hard to sum up in a few short phrases.  In a nutshell, people with SPD have a hard time handling the input they are getting from their environment through their eight - YES, you read that correctly, EIGHT - senses.  Some people with SPD are overly sensitive to what the world is throwing at them, while others are less sensitive.  Some people, like my daughter, are actually both overly- AND under-responsive, depending on which sense you are talking about.  Each case is like a snowflake, unique in the shape and form it takes.  The Sensory Processing Disorder Foundation has a great page that gives a more thorough overview of what SPD is, what it looks like, and how it's treated, to give you a bit more info on what I'm talking about.

SPD is NOT autism, or ADHD for that matter.  Yes, lots of kids who are on the autism spectrum or have ADHD have SPD, but not all kids who have SPD also have autism or ADHD.  The conditions do sometimes share some common characteristics and treatments, but they are not the same.  This misconception frustrates me for many reasons, which we will get into in another post, when I've had time to digest what exactly drives me nuts about it.

Over the past few months since C's diagnosis, we've spent lots of time in occupational therapy (OT), reading lots of books in an effort to become overnight experts on the subject, working to help her teachers understand what makes her tick and support her in the classroom, and familiarizing ourselves with a whole new vernacular that includes "vestibular"... and "proprioception"... and "motor praxis"... and "sensory diet."  I still don't think I can fully explain what's going on with my daughter with any sort of confidence, but we are getting there...slowly.

As we've been moving through this process, I have had this need to talk it out, figure it out, and share what I'm learning so I can better understand it myself.  Having good friends who have been through this with their own kids, or who are just beginning this process for themselves, has been invaluable.  Our family has been awesome, too.  But I still needed another outlet, and that's how I have come back to blogging.  Hopefully what I write here will not only be therapeutic for me, but also helpful to someone else.

Just like our family's life, the blog will NOT be entirely about SPD!  This diagnosis is just a tiny piece to the very cool puzzle that makes up my daughter and our family.  She is so very typical in so many ways, and like so many other kids with SPD, she looks and acts like any other kid a great deal of the time.  It's the other times where she is just a little more sensitive to her environment, and over- or under-reacts accordingly, that set her apart just a bit.  We'll dive into what we are doing to help her better navigate her world in future posts.

Anyways, that's it for now.  I'm excited to be back at it - I hope you stop by often to see what's going on in "Our Perfectly Imperfect Life..."!