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

Besties

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...  :)

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...