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.

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...

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...

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.

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..."!