Showing posts with label family. Show all posts
Showing posts with label family. Show all posts

8.17.2011

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!


8.10.2011

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?!

5.10.2011

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...

4.17.2011

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.

4.12.2011

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! 


4.11.2011

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


Besties


4.01.2011

TGIF...

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...  :)

3.23.2011

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..."!