On Becoming a Therapy Mom

As the Mister and I were deciding where we will lunch we when visit the orthotist in Norman in two weeks and I was debating the merits of thera-putty as a backseat toy on the upcoming road trip, I realized that I had become one of those moms.  The kind of mom who honestly believes her kids' activities are her hobby. "We do pageants," or "I'll see my friends between the school basketball season and the tryouts for the traveling team." The kind of "soccer mom" pollsters covet or "dance mom" that Lifetime uses for bad-looking television.  Except right now I'm a therapy mom.

Since I gave finals a month ago, I've made five trips to "The City" for medical appointments (four for Aster and one, thankfully unnecessary, for me), we've had three in-house appointments with the SoonerStart program and a formal Individual Assessment Plan meeting with the school.  We've got appointments upcoming in Norman and Denver before school starts again and we still need to get everyone to the dentist and to get his or her shots.  I've lined up some swimming and gymnastics with intention that they are therapeutic (but mostly because they are fun) and you should see the bag of tricks (including ace bandages and shaving cream) I bought for "CT Time" (constraint therapy).   We're "bear walking", big ball rolling and stretching daily.

Dianthus and Aster one-handed for first day of
home "CT Time"**

Compared to many of the CHASA parents, our therapy schedule is mild.  Many families are seeing physical therapists and occupational therapists weekly (or more) from a few months old.  Many also do speech therapy, some behavioral- hippo- vision- aqua- or other therapy,
and I was very sad to learn that most constraint therapy camps I heard parents talking about are not cool camps in the woods filled with kids whose good arms are in casts, but rather month-long day camps in medical buildings (with kids whose good arms are in casts).  I hope the reason that Aster hasn't had this sort of intensive therapy is because he hasn't needed it (the affected areas of his body seem limited), but I also know that living in a small town, lack of services, lack of anyone coordinating services and laziness of parents have all contributed*.

Aster is less constrained than originally intended

The scary thing is that we have no idea what's the right amount.  Aster has some use of his right hand and is an amazing compensator. Some of the people working with him have taken this as a sign that we are doing the right things and shouldn't stress, as he will clearly figure out ways to do what he wants to do.  Others see it as a sign that we could do so much more. Clearly he has some sensation and some motor control in his right hand.  If we act aggressively now, he might be able to re-wire his neural circuitry and learn to really use that hand before spasticity, lack of coordination and plain bad habits make disuse permanent.

Recent research (and lots of anecdotal evidence) suggest that mind-body connections are more flexible and repairable than previously thought, but that the extent of this plasticity varies greatly with age and with type of damage.  Typically, brains less than four years old tend to be the most malleable.  If Aster is going to have greater use of his hand, it is going to be because he discovers control of it now.  Or it may be because he decides to play saxophone to impress some girl when he is sixteen.  Nobody really knows  But we have a little control over the former scenario. So it's time for one-handed finger-painting tomorrow and stringing Fruit Loop necklaces all the way to Branson.

*And Mom, no need to remind me that I'm not lazy, but thanks for thinking it.

**Dianthus did really well just using his left hand.  Aster, well, he's more wiggly.  In these pictures we were playing with shaving cream and food coloring on the bathroom walls.

***And yes, I am fully aware of how lucky I am that I have job, finances, husband, transportation, mental capacity, and insurance that make these things possible.  I am very very fortunate in all of those regards.

I think I am ending the Steak for Pediatric Stroke 2014 here.  Thanks for reading.