Friday, May 22, 2015

Would it be better to be born without a hand?

There's a conversation about this happening among CHASA parents right now-- Would it be easier to parent a one-handed kid than a child with hemiplegic cerebral palsy?-- and most are taking the obviously correct view that we can never understand someone else's struggles, so we shouldn't even be thinking about this.

Still, once mentioned, we are thinking about it.  The actual "would it be easier?" question is futile (it's a bit like asking, "Would my life be easier if I were two inches taller?" when it doesn't much matter because I'm not.), but I think it is interesting why some parents are even discussing this:

  1. Because one-handedness is purely physical.*  Pediatric strokes frequently lead to seizures and have emotional, behavioral, speech, and cognitive consequences, in addition to the physical.
  2. Because one-handedness is known and definitive.*  No amount of physical therapy is going to lead to a new limb.  Lots of therapy might (or might not) change outcomes for a child with hemiplegia.  New braces might help (or might not),  Surgery might help (or might not). The symptoms might get worse (or might not).        
  3. Because people don't assume I one handed person is stupid.  Eh.  That's probably not true.  I'm sure there are a few idiots who speak loudly and slowly in the presence of a one-handed person because that's what they do with anyone who is different. But despite the Stephen Hawking example, many people correlate coordination with intelligence.  
  4. Because one can't see one-handedness from across the room, which may lead to first impressions other than, "walks funny".  
I'd welcome your thoughts.  And no, we are not going to chop off anyone's limb in order to find out.

*Remember that we are dealing with a perception of one-handed life here.  Not actual one-handed life.  I can think of lots of reasons these could be completely incorrect, but I'd rather post something from someone with knowledge than just speculate both sides.

Wednesday, May 20, 2015

Sharing Small Victories

Just the mention of  Easter Egg Hunts starts getting CHASA parents agitated.*  For many "hemikids" such hunts are an ordeal.  Holding a basket while collecting eggs and running requires bilateral coordination that many of them just don't have.

Grasping the basket!
Apparently in big cities, there are also special Easter Egg Hunts for kids with special needs, but sometimes kids with CP get glared at for not being special enough and sometimes get put with the younger kids who are more their speed and get glared at for being "that big kid" among the little kids**.

Of course, my simple solution to this would be not to have large group egg hunts for anyone, but that's not the point of this post.  The point of this post is that CHASA is a community where I could post these photos of my kids at my neighbor's house and the other parents could immediately understand my excitement that Aster is actually grasping the basket with his right hand! and my teary sadness that I can't help but compare Aster to Dianthus, who can manipulate eggs with both hand without a second thought (shown here counting them in order to slow him down). I ache a little at how much harder most everything physical will be for Aster while cheering that he can do all the things he can do.
 It's invaluable to have a place where one can share the little victories and the nagging petty fears.  Thanks CHASA!

Two hands all the time.
 

*They agitate me because of the commercialization, the plasticization, the sugar, the materialism . . . And the fact that we had a school Easter Egg hunt agitated me because of all of the above and WHY ARE WE CELEBRATING EASTER AT PUBLIC SCHOOL?

**For the sake of clarity, Aster has not received these looks, in part because we do not participate in large Easter Egg Hunts (which takes some planning to avoid parks at certain times around Easter), but I have heard multiple reports through CHASA moms.   It's hard to believe that people glare at kids like this, but then you think about how humans are, and it is really not that hard to believe.  Kids with hemiplegic cerebral palsy have also been kicked off of sports teams for not being handicapped enough-- after all, they can stand.

Tuesday, May 19, 2015

Two Times Equals Tradition?

At least one of my sons has my (unfortunate?) tendency to think that the way we have done something recently is the way we do something.  When combined with a typical 5-year-olds love of hyperbolic absolutes, you would think that we will never again have a different breakfast option because he ate pancakes two mornings in a row.  Given this logic, it seems we will always have neurology appointments on my birthday (this year and next) and CPclinic* on Aster's birthday (last year and this year).
Compared to last year, our appointment schedule this May is mild, but Aster will still have seen the orthotist (to fit his ankle foot orthosis), the neurologist, and the eye doctor within an 8 day time period.  The eye doctor, along with his speech, occupational, and physical therapists (all through school), is local.  The others are 75-90 miles away.

We are always driving around.  And we always eat rhubarb early in the week.

*At the Cerebral Palsy Clinic, Aster is seen by a pediatric physiatrist and a orthopedist, both of whom specialize in cp, at the same time.

Monday, May 18, 2015

I have a pea

I'm feeling awkwardly sentimental and none of my writing is working, so I present to you an image of a baptisia flower. It's in the legume* family.  Speaking of legumes, I picked and ate my first pea pod from my garden this afternoon.  And, speaking of pee, Aster has been going in the potty for a week*

*Pea and bean family: Fabaceae = Leguminosae includes peas, beans, clover, alfalfa, peanuts, locust trees, mesquite, lupine, baptisia, locoweed, vetch . . . and prairie turnips.

**Furious wood-knocking accompanies this statement.  I may be a scientist but I am not so foolish as to leave superstition to chance.

Sunday, May 17, 2015

Saturday, May 16, 2015

Cute Kids That Aren't Mine

Here is last year's montage for Pediatric Stroke Awareness (the 2015 one including Aster is under production). I had nothing to do with it, but it is pretty cool.
You can learn more at CHASA.org

Friday, May 15, 2015

Very Special Education

Aster has always been inquisitive and he could remember where Dianthus (his older brother) left Dianthus's shoes before he could walk or talk.  He's cognitively with it.
First day of school, August 2014
So it was a bit of a shock to his grandfather last year when we mentioned that Aster was "aging out" of EI so we needed to write an IEP for DPK.  Or at least it was after we had translated the acronyms: Early Intervention, Individualized Education Program, Developmental Prekindergarten, and the meaning became clear. "You're putting him in Special Ed?"

Indeed, we just returned from an annual IEP meeting, discussing Aster's accomplishments in a year of Special Ed and the plan for the future.  Although there was too much time spent telling stories about everyone's children while we waited for a malfunctioning printer, it was a very pleasant meeting. Aster will receive some physical and occupational therapy over the summer and will be in a "general education" preK class next year, leaving four times a week for various therapies. 

A four day a week pre-pre-school with three adults and five ambulatory three-year-old kids making baby belugas in bottles is probably not the stereotype of a "Special Ed." classroom. Oklahoma is unusual in the US in having universal, free pre-K through the public schools.  Apparently, our school district is somewhat unusual in having services for 3-year-olds provided at the public school through a classroom based program*.  Most special ed. classrooms, therefore, do not look like this.

But Aster's does.  And he loves it.

Apparently not all IEP meetings are quite as smooth as ours have been.  Many CHASA parents work for days, if not weeks, assembling a binder of documentation and sometimes calling in legal counsel before the meeting.  Meanwhile for ours we showed up, signed a bunch of papers, waited for a the principal, and learned of Aster's at-school exploits, while therapists wandered in and out as different papers needed updating and different printers needed printing.

I'm thankful that his education is special.

*All states in the U.S. have Early Intervention Programs for kids age 0-3 with delayed development.  Who qualifies, who pays, and how it is administered varies state to state.  I encourage anyone who knows of a child who is struggling to seek learn more about the local EI program, as early intervention really can change outcomes.  More information about EI and hemiplegia can be found here.
After age 3, different laws apply.  In Oklahoma, services for kids three and over is all done through the school system, and in our school district, everything happens at the school through a developmental pre-K class.