Because sometimes politics is personal

A small part of the reason I have not posted so much about pediatric stroke survivors this month is that talking about support for pediatric stroke survivors immediately becomes political.  It's hard to talk about special education without mentioning Ms. DeVos and IDEA; in-school services without Medicaid payments; medical treatments without how they are paid for; or future job prospects without discussing the limitations of pre-existing conditions.  Besides not wanting this to become a political blog, I am hardly an expert and enough of a rationalist to point out that 1) I haven't read the relevant bills and policies and 2) even if I had I would have no real idea about what they would mean in practice 12 years down the road when Aster will be finishing high school.  So I've stayed quiet here, knowing that my congressman is not intentionally voting to limit my career options and Ms. DeVos's purpose is not to prevent kids with disabilities in rural Oklahoma from becoming scientists.

But maybe that's part of the problem.  Silly as it sounds to suggest that some of this legislation is about me, a healthy, wealthy, educated, employed white woman, maybe some people need to hear more personal stories about how things affect "us".

Three out of the four members of my household have pre-existing conditions.  My pituitary adenoma is not currently being treated (for medical reasons) but is being monitored.  I really don't want to return to the time when I make medical decisions not to seek advice based on knowing I'll be changing jobs.  Yes, before the ACA people with cerebral palsy and pituitary adenomas did get jobs and insurance, but I know of many people relieved not to make major life decisions (marriage, sticking with a bad-fit job, starting a business) based on if they are insurable or not.

With too many parts it is hard to focus

Aster's long term health and vocational outcomes are greatly increased by regular and early attention.

Because of the Individuals with Disabilities Education Act (IDEA) Aster is assured a free, appropriate public education.

There are no other schools within 50 miles better equipped (or equipped at all) to educate Aster.

Special Education services (and sometimes school nurses) are largely funded through Medicaid reimbursements.

So, yes, these things are personal.

[I almost started the second rant about how science education and higher ed funding are personal, too, but I am getting to angry as I sit here.  Ugh.  For the record, I must point out that I have no problem with my children coming home from public schools with high quality coloring books and teaching materials produced by oil and gas companies.  However, I can't help but feel perplexed (at best) that 1) my son's second grade teacher told us that they had no time for science in second grade (and she doesn't like it anyway) but they had time for a whole Petro Pet curriculum 2) nowhere on the Petro Pete curriculum does it say who funded it 3) at the same time my son was coming home with Petro Pete coloring books, the state capitol was being surrounded by oil and gas vehicles as some legislators threatened to raise drilling fees  to balance the budget. So 4) the state legislature passed a budget that does not raise any revenue from the oil and gas companies that have funds to make curriculum, coloring books and pay for field trips to the science museum while the budget dictates continuing to underpay K-12 teachers and further cuts higher education.
By the way, the only way that my institution has stayed solvent during multiple years of significant budget cuts from the state has been to 1) increase tuition and fees [not pleasant when the mission of the regional institution is to provide opportunities for people in the (economically struggling) region and 2) increase enrollment from international students.  Yes, because the state legislature can't bring themselves to raise revenue, the economy of my small town rests precariously on welcoming Muslim students to my overwhelming Baptist and sometimes intolerant small town.]

None of it Hubig's

The Mister and I prepared for our recent excursion to New Orleans by watching Anthony Bourdain talk about food in New Orleans which led to watching the HBO series Treme*.  From Treme I learned about Hubig's Pies, little fried hand pies available at convenience stores, which helped everyone feel back at home after Katrina, and immediately added them to my list.  Alas, the Hubig bakery burned down in 2012 and is not being rebuilt, so I did not have a Hubig pie.  But I did have some great ones.

Our first night we ate the best piece of pecan pie I have had (and I don't say that lightly) at Brigtsen's  (actual pecan pie recipe here).  Somehow placing the slice of pie in a pool of caramel sauce enhanced it and didn't make it too sweet.  It was the perfect conclusion to a near perfect meal including sweet breads, soft shell crab, rabbit, and oysters.

Our third night we had a disappointing chocolate pudding pie after an otherwise phenomenal meal that included head cheese, crawfish pie, boudin balls, and oysters at Cochon.

Somehow the day in between included neither oysters nor pie, although it did include two variations on sno-balls (not the same as a snow cone), one after kayaking on Cane Bayou and one as a bonus course in the homage-to-foods-New Orleans tasting menu at Coquette.

I did not see them until the airport (and after I had bought the boys over-priced pralines), but once I identified them, I knew I had to carry home the Haydel's New Orleans Hand Pie Hubig replacement (although Haydel's are baked and not fried).  We split the cherry and the coconut cream six ways when we returned, and they were tasty enough, although nothing for which I will return to New Orleans.

7, 45, 5  May 20, 2017

Also, upon our return, Aster and Dianthus presented me with a birthday chocolate tart with a pistachio crust baked by my mother and then my mother and I celebrated Mother's Day together a week late by baking a rhubarb pie (following the Magpie crust and the Art of Pie filling thickened with a little tapioca).

So I'm another year and seven pies wiser (and experienced in all kinds of things, from packing by candlelight under a tornado watch to kayaking to changing transportation plans because of the Lee statue coming down in Lee Circle) than I was last week, and my small basement tornado shelter has now been used (by my parents and my sons).

It's a good adventure.

Rhubarb from Colorado May 2017

I plan to use this photo of my lovely mother
for the People of Pie series, but just in case I never
post that series, you can see how great my mother is.

*I am aware of the irony/condescending privilege/silliness of learning about tragedy, resilience and  and soul from watching an HBO series before a three day trip with every meal planned out. None the less, I appreciated the town a great deal more from having watched and learned.

Altogether lacking replication

Much of the discussion on the CHASA Facebook group (Children's Hemiplegia and Stroke Association; chasa.org) centers around expectations and behavior.  All of the parents want to know what will happen with their children-- will they walk?  pee in the toilet? pass third grade?  fall in love? play an instrument? keep a job?

Hunkering down with grandparents and stuffed animals
as tornado sirens roared

Every time their child does something unusual, they want to know if it is, in fact, unusual, and if it is a result of the brain damage.  And every time someone asks, "Does your hemikid* do X?" a bunch of parents respond, "Hey, wait, my kid also does that.  I thought he was the only one," and after a bunch of similar responses, someone will invariably add, "but my neurotypical child also does X.  I don't think it has anything to do with hemiplegia."  And the thing is, we don't know.

Aster has some unusual behaviors.  Sometimes I look at him and think, "your are one weird little dude" and when a CHASA parent posts a link to a British list of frustrating behaviors of kids with hemiplegia (found through HemiHemp here) I can read through the whole list and nod because my kid is exactly like that.  I can point out that the adult I know with mild cerebral palsy has always had unusual behaviors.  But then she is a PhD biologist and the child of academics-- there was no way she was growing up normal.  And there are my "neurotypical" son, husband, brother, and brother-in-law: "Whoah, there are some weird dudes**"  "Insult to brain" in infancy-- genetics -- environment-- we are never going to tease those potential causal factors apart.

So I guess I have two points.  One is that unusual behaviors, especially regarding impulsivity, moodiness, and challenges with social cues are common in children who have survived strokes.  These behaviors may be caused by, or in addition to, issues they have from physical problems (more pronounced fatigue, spams, pain and lack of sensation, constipation, poor balance, early arthritis and joint issues).  You might not think that a long ago brain injury that only seems to affect movement in one limb would have anything to do with outbursts after dinner-- but if somebody has been working harder just to walk, struggling mightily to keep up because they can't write quickly; holding pee all day because they are embarrassed to ask for help with the snap on their pants; and have an itchy foot from sand that got stuck in the brace; it's not terribly surprising whether or not the brain damage affected executive function.

The second is that we don't need to know causes of behaviors in order to treat each other compassionately.

If all life is an experiment, it is a really poorly designed one with no control and poor replication.


*"Hemikids" was the original name for the organization, and children with hemiplegia are still sometimes referred to as hemikids.  It still makes me giggle because, while I know they are half goat, I do want to know what the other half is.

**Mother and mother-in-law-- your kids and grandkids aren't exactly normal. I, for one, think that is a very good thing.

Moms have strokes, too

Regular readers already know that I have a fabulous mother and mother-in-law, and don't need me to repeat how lucky I am in this regard.  But I still feel that I should acknowledge Mother's Day and somehow tie it in with pediatric stroke.

Probably most in utero stroke victims are not survivors (my speculations based on information about miscarriage rates and stroke rates, not something that I have read as such).  Stroke is one of a great many causes of miscarriage, which, along with infertility in general, is still very under-understood and too little discussed.  If you want to better understand and acknowledge the pain associated with these conditions, I highly recommend Elizabeth Hagen's Birthed and the guest posts on her blog about infertility and other dreams seemingly denied.

Also way underdiscussed in this country is maternal mortality.  Pregnancy and childbirth are still high risk endeavors for mothers, and as NPR reported this week, numbers of women who die in pregnancy are poorly tracked and rates are increasing in the US*.  If you haven't cried enough recently, you might want to read the whole piece on ProPublica.  Most of these women are not dying of strokes-- but some are.  Heart conditions and blood clots and strokes; with many of the deaths preventable with awareness, rapid diagnoses and treatment.

Kids have strokes.  And so do adults.  Act FAST: if you notice anyone with Face drooping, Arm weakness and Speech impairments, it is Time to call 9-1-1 (This from the American Stroke Association).

*Slight aside: Of course, pregnancy increased chances for domestic violence and, despite the numbers, the CDC cannot track this if it involves gun violence.  Because clearly the forefathers wanted to protect us against knowledge of people killing their family members by not infringing on our rights to a well-regulated militia.

Unable to Put His Foot Down

Last spring at White Sands, these tracks stunned me.

Of course I'd seen Aster walk, so I knew how much time he spent on his toes.  But there was something about seeing the trail of evidence that stunned me.  The kid did not put his right heel down.

This time last May I was in Colorado for his gait analysis.  They hooked him up to fancy computer equipment and had him walk with electrodes on in front of a blue screen.  They concluded that he didn't put his foot down.  I refrained from mentioning they could have just laid out some mud or sand.

White Sands "Gait Analysis" March 2016

Before gait analysis, May 2016

Purple Flower 

May 2016

Rocket Man

A diagnosis of hemiplegia, stroke, or cerebral palsy brings lots of unknowns  (Aster has all three, as defined back here).  For the parents, one of the greatest is not knowing if your kid will be able to do X-- with X being walk, read, ride a bike, keep a job, play an instrument . . . you name it.

March 2016

Alamagordo, NM March 2016

Of course, worrying about any individual's future is futile (within the last two weeks, four friends in their 40s have learned that cancers in their bodies have returned or are worse than expected); we can't know anyone's fate.  But Aster, like other kids, takes it all in stride.

He announced recently.  "I can't be an astronaut because of my paralyzed right side.  So I'm going to build my own rocket to go to the moon."

I like his thinking.

Ironweed Vernonia baldwinii Summer 2016

No handedness before 18 months

One of the goals of pediatric stroke awareness month is to make people aware that kids can have strokes so that stroke survivors can get recognized as such and get the help they need to gain or re-gain function.

Parents don't seek treatment for problems they don't know are possible, and I've met medical professionals surprised that kids can have strokes, too.

Typically developing babies quit clenching their fists constantly by three months and don't have a strong hand preference until almost two years.  If a baby you know if still holding one hand in a fist at 6 months and distinctly uses one side of the body differently from the other, encourage a doctor to look for other indicators of pediatric stroke and seek help.

See CHASA.org for more tips.

Ranting Averted

For today, at least, I will leave you to draw your own conclusions about whether or not Aster and I are people who "lead good lives" because I don't have it in me to rant any more about pre-existing conditions, and, to my knowledge, there are no U.S. Senators among my readers.

So for today, some iris from February
.

Welcome, Pediatric Stroke Basics, and Returned Kites

My mother has been sending people over to my blog (thanks Mom!) in the middle of finals week when I have nothing posted (eh, thanks Mom?).

So a brief overview to those of you new here:  Sparkling Squirrel Year (now in it's 11th year!?) was started as a way to record my progress on my annual theme (in 2007 it was rodents, in 2003 it had been sparkling wine) and write about books and food, all of which I still do (this year is YEAR OF PIE, as is rather obvious when you scroll down a bit).

At some point I started posting photos of my kids (Dianthus and Aster are not their real names, nor is my husband's actual moniker "The Mister") and then myself, and it's become a more free-form way to apologize to friends and relatives for not keeping in better touch.

I typically post purple flower photos with streak for stroke posts

Except during May.  May is Pediatric Stroke Awareness Month and somebody at the Children's Hemiplegia and Stroke Association (CHASA, at chasa.org) years ago decided to start having a "Streak for Stroke" that involved doing something repeatedly (e.g. in the sense of winning streak). I decided to start blogging up a streak for stroke (inexplicable purple flower photos and all) every May.

During the month I will direct readers to information about pediatric stroke and write about my experiences as the mother of a pediatric stroke survivor.  [Aster (now 5) had a stroke (or similar "insult to the brain") in utero and has hemiplegic cerebral palsy as a result.]  I'll also continue to write about pie, books, and the world around me.

You can click on the Labels "Streak for Stroke XXXX" or "SFS about stroke" to find stroke information I've posted during past streaks.

And welcome.

For those of you keeping track of other things, the whole flock of Mississippi Kites soared into town at about 8:03 a.m. today, Wednesday May 3.  The Mister had seen an early wanderer, but not a whole group, and I had seen none this year.  According to my data, this is the latest we've seen (2012-2016 has been April 25 to April 30), but then there was a rather impressive storm keeping anything from flying over the weekend.  It has happened before, but it was rather amazing to catch the moment they arrived. 

May Day!

It's that time of year again.  Workers march.  Pagans frolic.  I think about flowers.  And we all raise awareness for pediatric stroke.

First Big Bouquet of the Season
April 17 (peonies are pretty much done now)

Yep, May first, the beginning of Pediatric Stroke Awareness Month.  I'm proudly wearing my new CHASA "I Believe in a Pediatric Stroke Survivor" t-shirt and shamelessly posting a picture of my favorite pediatric stroke survivor with his new glasses and think about all of the cool things I will be posting this month-- after finals.

Don't call them "Rick Perry glasses" to his mother