How to talk to the mother of a pediatric stroke survivor

As the point of this (somewhat less than continuous streak) is to raise awareness about pediatric stroke, I figure I should have at least one explicitly informative post about pediatric stroke survivors and their families.  So here goes.

How to talk to the mother of a pediatric stroke survivor

Soccer Spring 2016: Hemikids want medals, too.

That's easy.  Speak to her and her child the way you would speak to anyone else.  (Unless, of course you are generally a jerk to people, in which case you should quit it.  Or if you mutter things like, "but at least she is cute" or "God only gives you what you can handle" or offer unsolicited parenting advice with a judgmental sneer.)

How to be up on pediatric stroke lingo when you talk to the mother of a pediatric stroke survivor

This requires much more explanation, and is less generally applicable (it turns out that I am not the first to come up with "treat others as you would like to be treated" and it works in many situations), but here goes.

CP = cerebral palsy  An "umbrella diagnosis" inconsistently applied which refers to symptoms of motor impairment as the result of brain damage before the age of two.  Cerebral palsy is not degenerative, however the impairments may become more pronounced with time.  A lifetime of differential use can lead to different to limb lengths and an unusual gait both of which can lead to more serious joint problems. even though the brain damage is not expanding. Seizures and spams can both increase with time as well.

RH= right hemiplegia  (or right hemi) having motor impairment on the right side of the body (as a result of brain damage on the left side of the brain).  Aster is a RH.

PT, OT, SLT  Physical therapy, occupational therapy and speech language therapy.

SPD = sensory processing disorder.  Many "hemi-kids" have issues as being easily over-stimulated or by being stimulation seeking.

Physiatrist = Physical Medical Doctor or Physical Rehabilitation Doctor  A physician who specializes in movement.



IEP = Individualized Education Program  A unique plan for every child in a special ed. program.

CIMT = constraint induced movement therapy (I think).  Forcing use of the affected side of someone's body by making the non-affected (good) side non-functional (often through casting).

EI = early intervention   State-based programs to get young people (under 3) help they need.

AFO = ankle foot orthosis  A brace

CHASA - the Children's Hemiplegia and Stroke Association-- THE place to go to learn more about  pediatric stroke or to donate to small scale programs that help families of kids with hemiplegia learn from each other, share suggestions, swap shoes, learn about research programs and feel much less alone.

Bird (and Bear) Moms: Figuratively

I'm unsure of my parenting style.
I'm told that it wasn't that long ago that "parenting" wasn't a thing, certainly not a thing that was done in any particular style.  But I live in the twenty-teens in the United State and one can't just try one's best to raise kids to be compassionate, intelligent adults.  One need a style; be it attachment, free-range, helicopter, Chinese mom, French mom, or honey badger.

Among CHASA Facebook discussions, lots of parents talk about bringing out Mama Bear.  After all, if mom doesn't stand up to demand what a kid needs, who will?
Mama Bear is deemed necessary because pediatric stroke survivors can have a long list of special needs, physically, developmentally, and educationally.  And many of these needs can be ignored, missed, or denied.  CHASA discussions are filled with stories of doctors labeling parents as hypochondriacs rather than helping them seek help; teachers skipping the accommodations written into an IEP*; in-laws avoiding grandkids because they don't know how to deal with their sensory issues; or formerly good friends assuring mothers that "nothing is wrong" with their hemi-kids as they miss key developmental milestones. It probably doesn't need to be said that a special version of Mama Bear; Mama Bear Accounta
nt File Keeper Extraordinaire can be necessary for dealing with insurance claim paper work.

On another side of things, I am a teacher with lots of teacher friends and relatives.  Certain parents are not seen as necessarily protective bears, but rather as seagulls.  They swoop in, make a lot of noise, ruffle a lot of feathers, and leave a mess of waste in their wake.

I don't want to be a seagull parent.

I don't really like being a bear.

Eagles before color/mud race May 21, 2016

But if the Mister and I don't make some noise, sometimes nothing happens.  Our initial neurology appointment, at age 2, triggered a bunch of Early Intervention (EI) steps because of the cerebral palsy diagnosis, but we had known Aster had experienced a brain event since well before he was born. I learned about CHASA from a google search looking for toys that force the use of two hands, about botox and constraint therapy from CHASA, about physiatrists from a occupational therapists who stopped by once, and about the CP clinic in Denver from trying to find something else.  Aster has a great team of people looking out for him, but with nobody "in charge" few recommendations are every made (except, "oh, yeah, that would be definitely something to look into").  Being a barred owl (out of the box and flying in a month) isn't going to work for this family.

I need some other style.  I don't want to keep my kids as close as an Emperor Penguin, nor abandon them to crash on the rocks the first time they fly, like a gannet.

Watching the cameras on the live birds, the bald eagles most resonated with me. The cynical among you might point out how stereotypically easily persuaded American that is, or how much easier it is to get good views inside an eagle next compared to a condor cave or a cramped owl box. I choose, however, to notice how duties are split between both eagle parents.  How the eagle kids appear to get along.  How the parents give the kids space, but always seem to know what is going on.

I hope to be a proud eagle parent.**

*Individualized Education Program: the official document of special education in the United States under the Individuals with Disabilities Education Act (IDEA).

**Pun about the local Pre-K-1 elementary school being the Eagles, and this being the last night Dianthus being a student at that school, entirely unintended until about halfway through the post, when I remembered this photograph and made it intentional.

Bird Moms: Literally

Apparently this has not been the year to succeed in the streak for pediatric stroke.  I keep thinking of things to write, and then I keep doing things like counting seedlings, attending way too many end-of-the-year "things", going to bed at a reasonable hour, or volunteering to make a 9 x 13 banana pudding for an end of the year teacher lunch via our church (the last one baffles me a little, too).

On the long list of "maybe I should write about X" was a piece on bird parents.  The geese, swans, and ducks in Ugly were so different from each other, and so like my observations of ducks (short term pairing, if at all), swans (protective) and geese (actual families).  The D.C. bald eagles (who, at two months, look like black eagles, instead of fluff balls (1-2 weeks) or gray things with giant talons (at a month) have had full parental support from both parents all along.  The gangly, awkward condor chick always seems to be alone, and the barred owl parents are now alone, all three owlets having grown up and "flown the coop", while the barn owl eggs are now fluff with owl faces, seemingly carefully tended.

The mockingbird (wanna-be) dad successfully kept the Mississippi Kites from nesting in our yard this year; a bonus if we want to actually spend time in the garden. A brown thrasher pair has spent considerable time in our yard, perhaps nesting in the honeysuckle.  Of course, if you want to see bird parenting extremes, you could watch March of the Penguins.  But the big deal this year are robins nesting in the euonymous by my parents' front door.  Cool things happen in bird year (but I have no pictures, so here is a larkspur photo taken last summer with a flash).

Ugly, the Book

Given my recent experience with young adult fiction, my knowledge of Donna Jo Napoli's twistedly re-told fairy tales, and my propensity to see signs in everything recently ("Hey, I found this book with a duckling on the cover at the library bird sale during bird year and I just happened to read it the night before Aster's IEP meeting amidst discussions about delays, disabilities and differences due to pediatric stroke,") I was expecting to find some sort of painful, not-fitting-in growing-up allegory in Ugly.

Napoli's Ugly, however, is a straight re-telling of the ugly duckling, narrated by the bird from before its yolk sac was reabsorbed until it is a year old.  There are no overt messages about special needs, homosexuality, or the cruelty of teenagers, but, as with all re-tellings, I'm sure one could find them there, and I'm certainly not going to advocate for a decrease in empathy and compassion.  Still, ror a North American reader, Ugly does have a pretty extreme twist.

Neither ducklings nor swans.
Kansas, late May, 2015

The bird is born in Tasmania.  It migrates north before the July winter.  I'm a little embarrassed by how much that really did throw me.

Rules to live by

One of the seldom mentioned perks of having annual themes is that it eliminates some decision making.  

Do I take a poor quality picture of the rodent at the Sonoran Desert Museum?  Of course I do.  Rodents are one of my things.

We happen upon The Curious Kumquat in Silver City, New Mexico at lunchtime. They are serving only full sit down meals rather than purveying supplies for a gourmet picnic.  We already ate a full breakfast and don't plan on a full restaurant lunch.  But there is a duck confit salad on the menu.  And a Oaxacan Mole Chicken sandwich, and it is bird year.  So we stay and now I "get" duck confit.  It was fabulous

And while in Tucson, we were at a Mexican grocer and encountered fresh garbonzos for the first time in my life.  Do I know what to do with fresh chick peas?  No.  Should I get them?  A brand new bean?  By all means, I need to try those beans.

Thanks to the Mister's Mother for shelling.  Steamed with salt and pepper, the beans were fine.

The kites are in control

The Mister and I saw one Mississippi kite very early this year, on April 7, but then I didn't see another one again until April 25.  Friday, April 29 there were ten in a tree near the park and today they were all over the place.

Most of the spring we've had a mockingbird singing from atop the pecan tree on the corner of our street.  I've been dismayed the last two days to find that a kite has take over the spot.

I was telling our new vertebrate professor my brief history of kite phenology (a.k.a. they come at finals every year) when he reminded me that they weren't here when he was growing up.

Change happens.

Penguins for Stroke Survivors? Kandu!

This afternoon CHASA (the Children's Hemiplegia and Stroke Association, found at CHASA.org) announced the launch of a new Kandu book.  So just now I was given an opportunity to write about Lucky, a penguin at the Santa Barbara zoo with an orthotic (featured in this great Penguin with a Funky Shoe Video), who became the inspiration for the CHASA mascot, Kandu and to tell you how you could support the workings of CHASA by donating to the Kandu fund.

Bird Year - Pediatric Stroke Awareness Month - and A Penguin with Ankle Support

It all comes together.

Crying through the glowing bird books

I used to not be a weeper.  Really I wasn't.  I'm sure I cried at socially acceptable times, but I made it through lots of sad movies, two teenage break-ups and numerous oral reports without thinking, "I cannot talk about bison or Tasmanian Devils in class because I will blubber.*"

Then something changed.  Then I became the me of now who needs tissue for most movies, many sermons, anything to do with genocide and extinction, and a smattering of seemingly random news and history events (women's soccer, Prague spring, and ski jumpers from countries without snow make me bawl).

So I'm about to write three books that have made me cry recently, and I can think of three directions I could take in writing about them.   1) All three are books whose narrators are "different". One is an autistic 15 year-old in England, one a young girl with Asperger's in Virginia, and one is a 17-year-old in Indiana who probably is bipolar, but refuses to be diagnosed or labeled.  All three are very well written and the successfully transported me into somebody else's head space where I felt uncomfortable (and slightly guilty about being glad I am "normal"), which I could tie into Pediatric Stroke Awareness as I point out how often pediatric stroke survivors have sensory processing and emotional regulation issues and just "think differently" (literally via different pathways) than others. I'd use the books as reminder to be compassionate with teenagers, parents of teenagers, parents of special needs kids, and everyone else.
2) I could rant about compassion for cryers: other forms of emotional outburst are so much better accepted.
3) I could write about the glowing and bird symbols and references.

But I think I will just write them here, recommend with qualification that you read them, and take myself to bed to get a few pages into a "book from the happy section" before I end up crying myself to sleep.

The books are:
The Curious Incident of the Dog in the Night-Time by Mark Haddon
Mockingbird by Kathryn Erskine
and
All the Bright Places by Jennifer Niven (with characters Violet and Finch)

Happy (or not) reading!

*Yes, I have cried in class talking about these topics.
Oh, and for the record, it was 13 years ago today I that I met the Mister.  He was confused when I brought it up yesterday.

Fly on Campanula

I was on the verge of posting the fly on campanula without any commentary, pediatric stroke, bird or otherwise, when I realized it is the anniversary of my first meeting with the Mister.
Now I'm posting an image of a fly on a campanula (taken in Rocky Mountain National Park last July) with an unrelated statement that I'm glad I met the Mister 13 years ago.

Tomorrow I hope to improve (i.e. start) the "blogging streak" with some actual pediatric stroke information.  For now, fly on campanula.

May Day Streaking

Happy May Day!

At Saguaro National Park, May 15 2016

I am again going to celebrate my favorite month by blogging a streak (20 days this month) to raise awareness for pediatric stroke.

And during this streak for stroke, while I will talk about pediatric stroke, my favorite pediatric stroke survivor, and how CHASA helps families of kids with strokes, I'm going to post pictures of flowers and talk about birds because that's what I do.

Come back often, and in the meantime, celebrate the season!