Monday, July 23, 2012

Astronaut Training

Bizarrely, tonight was the night I was going to write about Charlotte's new physical therapy program, which is called "Astronaut Training."  It seems kind of weird to write a blog post about astronaut training that has nothing to do with astronauts or Sally Ride, who passed away today.  But, here I go anyway.

It's been weird posting about Charlotte's PT & OT needs.  I'm not sure how much to say, or how much even merits saying.  Right before she turned 3, we noticed (and her grandmother noticed, I better make sure I mention that) that she spent a lot of time walking on her toes.  Like, a LOT of time.  Way more than half.  Almost constantly, actually.  Matt & I dismissed it, thinking she'd probably grow out of it, but her grandmother elicited a promise to have us ask the pediatrician about it at her 3 yr physical.  So Matt did, and the doctor agreed that it was an awful lot of toe-walking, and observed her for a bit.  Then, after testing her range of motion, diagnosed tight heel cords and excessive toe-walking, and referred her to a local physical therapy program.

We got her into physical therapy, with a really great therapist, Arlene, at the tail end of 2010 and beginning of 2011.  Between weather and car troubles, Charlotte got 8 appointments spread out over 4+ months.  After some initial rockiness while we sounded out Arlene and she figured us out, it was a really great fit, and we learned a lot about what was going on with Charlotte.  Namely, some sensory processing issues of the vestibular variety, with attendant physical issues of low tone, poor core strength, and tight heel cords.

Aside - I have a hard time writing about all of this.  Not because I'm ashamed that my kid isn't perfect, or that I fear that I did something wrong and that's why this stuff is going on.  Nothing like that.  More like, I hate to make a fuss, make it seem like this stuff is more important than it is.  Or a bigger deal, I guess, since I do consider it important.  I don't want to be like, OMG, my kid and her therapy, my kid has a disorder, blah blah - nothing like that.  But it is part of Charlotte, and actually, a big part of Charlotte, and we can see how this kind of thing, left unadressed, could snowball as time goes on and in her later school career.

Kids who are hyposensitive to vestibular stimulation, like Charlotte, crave vestibular input.  Spinning, twirling, moving fast, hanging upside down, jumping up and down are all things she loves to do, and these are things that satisfy her craving.  Problems sitting still, issues going down stairs, and easy motion sickness are also signs of vestibular integration disorders.  Kids with vestibular processing issues might also have low muscle town, poor sitting posture (W-sitting) and walk on their toes.  Poor hand-eye coordination & trouble crossing midline visually are additional signs, though I am less sure how that is related.  I do know that it's another thing on the checklist we can tick off, though.

None of these things really bother Charlotte in everyday life as a 3 or 4 year old.  But it was actually really good to have this "diagnosis" (it's not actually a medical ICD-10 diagnosis, this is relevant later) going into her school career.  It's something to talk to with the PT & OT folks in Charlotte's elementary school, as well as her preschool teacher.  It's easy to see how some of Charlotte's behaviors, while fine at home, might be trickier to assimilate in the classroom.  Spinning around in circles in your living room because you need input is fine - doing the same during, say, story time is less acceptable.  Problems sitting still in the proper posture becomes a little disruptive.  And difficulty using scissors and pencils is really not convenient when you are learning to, say, write & cut paper.

Charlotte had those 8 appointments last year, but that was all our insurance would cover.  Since "vestibular integration disorder" is not an accepted medical diagnosis, the only thing that we could bill for was "tight heel cords", and only 8 appointments a year was deemed acceptable.  I learned a lot from Arlene in those 8 visits, and we made some goals to work towards until we could be covered again.  Last year, the big concern was working on Charlotte's muscle tone and core strength, since that would help her feel more secure in her balance, and maybe offset some of the toe-walking & spinning.  A year later, at Charlotte's 4 yr old physical, we had the doctor observe Charlotte's toe-walking again, and got another referral to get back into the PT program.  Amazingly, a space with Arlene opened up, and, a little over a year after her last appointment, Charlotte got back into a PT schedule with Arlene.  Arlene was really pleased with the work that we had done, both at home and at school (where Charlotte had started a PT evaluation process, and had a few 20 minute sessions before the end of the school year), and decided to get down to the nitty-gritty of vestibular integration therapy.

This brings us to the titular Astronaut Training.  It's a vestibular/auditory/visual series of exercises developed by an OT.  They gave it a theme of "astronaut training" to get the kids interested in the exercises.  They are described using space words, and with a space theme, and even the background music on the accompanying CD is kind of "space-y" sounding.  This is the program Charlotte & I are doing for the two weeks while Arlene is on vacation, and we are missing our PT appointments.  So far, it seems to be good stuff, and Charlotte really loves doing it, which is the important part.  Part of it involves laying on a spinning board (checked out from the PT department) with her eyes closed while I spin her - this is pretty much her favorite thing in the world.

All in all, I'm happy this is something we're working on.  Learning why Charlotte does what she does, and learning that some of her more disruptive behaviors are actually related to something going on with her physically, not just a sign of stubbornness, was enlightening.  And having this fore-knowledge made some of her preschool transition issues a little easier.  It also made our decision to keep her in another year of preschool, instead of fighting to get her into kindergarten this year, a no-brainer.  For a kid who still has trouble sitting still and holding a pencil, it makes sense to do another year of preschool - and almost more importantly, physical therapy - rather than fighting with the school district to let Charlotte start kindergarten 3 weeks before she turns 5.

Here's some links to both Sensory Processing Disorder (SPD) and the specific vestibular stuff:

* Astronaut Training
* The Vestibular System and SPD
* really good article by an Australian SPD organization on vestibular processing
* Vestibular Dysfunction
* What is Vestibular Disorder?
* wikipedia definition of Sensory Processing Disorder

I'll post more about the occupational therapy side of things, the fine-motor stuff we've been working on, and some of my favorite resources.  It's kind of funny, funny weird, that this would come up with Charlotte.  Back in 1998, when I worked in a day care, one of my kids, I'll call him Sam, had some major sensory processing struggles.  The teacher recongized it for what it was, not a stubbornness or behavior issue, but a processing one.  Her son had similar issues when he was a toddler, so she had a feeling there was more to Sam's behavior than just acting out.  Because of her, I learned about what was then called Sensory Integrative Disorder, SID, and I was intensely interested.  I did some research, and even wrote papers for one of my child development classes.  This interest never went away, and stood me in good stead when I related to some other kids in my life who definitely had some processing issues.  So by the time Charlotte came along, and I watched her spinning and running in circles for ten minutes at a time at the end of the day, I was able to say to myself, "You know what?  This behavior looks really familiar."  It was good to start the conversation with at least some knowledge of what Arlene was talking about.  To have her say, "I think what we're dealing with here goes beyond heel cords," and to have me say back, "I've been wondering if there's some sensory processing stuff going on," was just a good way to begin all this.

So here we are.  Almost five years old, and deeply involved in astronaut training.

(edited to correct a PT/OT slip-up!)


  1. I'm glad you posted this...I never really know how much to ask and how much you want to share, but this was really interesting. And it sounds like you're being a good advocate for C, so that helps too.

  2. yeah, the other thing is that since SPD is one of my interests, i could go on in this vein forever, regardless of my audience's level of interest. so i don't always get started. ;)

  3. great article! I just wanted to make note that astronaut training program was developed by an "occupational therapist" not a physical therapist. It sounds like you are a very motivated and involved parent and your daughter is very lucky for it.

    1. Thank you! It took me a while to correct it - when I get going with typing, I tend to switch up my PT/OT.