"Don't want to wear it now!"

Aster has a new night splint after a visit to a hand-specialist occupational therapist today.

"I don't want to wear it now."  "Don't want to wear it now."  "Don't want to wear it," resounds down the hall as The Mister coaxes him to lie down.

It might be a long weekend.

Embarrassment

Three weeks into the four-week itty-bitty soccer season, I was mortified.  Three and four year-olds in the very friendly, indoor, three-on-three no-score-kept league were spinning around, running from the ball, running to the ball, picking up the ball and generally having a good time, and there Dianthus was, dribbling the ball down the "field" and shooting it into the goal, following through if necessary.  He was great.  He stopped the ball when the other team kicked it at him (causing one of them to stomp her feet with indignation) and converted it to a goal.  He couldn't come out for long; too many of his teammates were sitting with parents refusing to play and we couldn't tell him not to do exactly what he was supposed to be doing.
So he ran the ball down the field again, shot again, and scored again.  Over and over.
The other parents cheered.
My mother, having never seen me score a goal in ten years of soccer games, was dumbfounded.
I was embarrassed.
Next year I hope he'll have some good competition.

I don't remember being embarrassed about being associated with good skill.  I'd been embarrassed for somebody losing badly or who is completely outclassed.  I was embarrassed for the girl in the state 4-H demonstration contest who brought a cheering entourage that kept getting more and more excited as the announcer counted down from 10th place and her name hadn't been called. I felt sorry for them as they were congratulating her after the runner-up was announced (still not her) and plenty awkward as I walked past them to accept my champion prize, but I wasn't embarrassed that I gave a great demonstration.
With Dianthus and soccer, I felt guilty running into one of the other soccer moms at the park.

Dianthus had an end of the year preschool performance last week.  He sang and danced and recited four pledges.  You'll be pleased to note that, based on his four-year-old self, he is not one of those annoying people who is a great athlete and the star of the show.
Next year I hope he'll clap at least in the right line, if not actually on the right beat.

[In addition to showing of his fetching "Stars" soccer shirt, the photos are serving as bonus phenology records featuring our new figs and kiwi. Those images were taken April 5].  Nothing today about strokes or Aster, but feel free to stop by CHASA and learn more.



 

Why CHASA

You'll notice that every stroke related post during the streak links to the Children's Hemiplegia and Stroke Association (CHASA) at some point.  Of course this is partially because the Streak for Stroke is a fundraiser for the association.  Beyond that, however, I think it is one of my goals to raise awareness not just that kids have strokes, but also that there is information, help, and support for families of kids who have hemiplegia and strokes.
I encountered CHASA because I googled "two handed toys" and found this 2011 Streaking for Stroke blog post that alerted me to the existence of such an organization.  Through this blogging streak, I am hoping to raise awareness among my "readers" (a.k.a. a small and wonderful set of my family and friends), but I am also hoping to be a conduit as Nancy Clark was (unknowingly, I'm sure) for me.  If you arrived here randomly with a child who may have had a stroke or with a frightening cerebral palsy diagnosis, by all means, poke around my posts (the label of "Rutherford Robinia" will lead you to my pregnancy, "Aster" to posts about my son with hemiplegic cerebral palsy, "Streak for Stroke 2014 to the whole streak and "sfs about stroke" just to those that may be relevant), but then get yourself over to the CHASA webpage where you can find good information, a shoe exchange, possible research studies, paperwork and terminology help, and links to the social network of supportive parents in the same boat.

If you would like to support this small but amazing non-profit, you can donate time or money directly on the website and you can set your amazon smile to give money to CHASA every time you make an Amazon purchase.

Turmeric

I interrupt reminding you that kids have strokes (but if you want to read more about that, by all means scroll down, or get a broader picture from the Children's Hemiplegia and Stroke Association) to return to my roots resolution.

Beware- turmeric stains!

The edible part of turmeric (Curcuma longa) is not a root.  Like the edible part of ginger, turmeric is a rhizome, a horizontal stem modified for storage.  If you look at fresh (or dried) turmeric for long enough, you can convince yourself that it is strongly flavored, for it is definitely strongly colored, but, in my experience, there is a reason one blends it to make curry powder or yellow mustard.  It looks like it tastes strongly, but it just doesn't.

No connection between pansies and
turmeric.  I just need a purple flower
for the streak.

None the less, I was very proud of a butternut squash coconut milk curry using fresh turmeric (and carrots, and ginger, and cumin and coriander and a bunch of chilies).
I have not investigated the health benefits of turmeric, although there are reported to be many.  The plant is a tropical monocot in the Zingiberidaceae (the ginger family) and, despite the best efforts of the students who work with me in the greenhouse, I have been unable to propagate it from one of the Asian market rhizomes.

On de River in Egypt and Associated Guilt

Denial flows rampant through the pediatric stroke community.

There's plain crazy denial-- a facebook friend being told by her facebook friend that she should stop advocating for pediatric stroke awareness because babies don't have strokes.

There's legalistic ass-covering denial, which, fortunately, my family has not been privy too.

There's intending-to-be-supportive denial, "your kid doesn't belong in the three-year old program, there's nothing wrong with him."*

And then there is the regular, old, not seeing what is in front of you denial.  We've been there.  Sometimes we are still there.

Knee-walking purple-haired rock star
on Halloween at 15 months.

When other CHASA parents learn that Aster did not start  SoonerStart (the Oklahoma early intervention program [more on that on another post]) until after he was two, they pity me, assuming that, as with so many other pediatric stroke survivors, we didn't know about Aster's stroke until his developmental delays were so pronounced that even his pediatrician couldn't deny it any longer.

Except that I knew about his stroke when he was twenty-some weeks along, and knew that the brain had re-organized following the bleed before thirty weeks.  His doctor (a family doctor, we don't have a pediatrician here) and my obstetrician both knew about it before he was born.   But he was born good-sized, wailing and peeing, and so we went back to worrying about if we would ever sleep again, as parents of a newborn and a two-year-old do.

When Aster was six months old, the nurse at the doctor's office asked about unclenching his fist, and it occurred to me that he didn't, but we didn't do anything other than note it.  At 9 months, he was army crawling all over, but not using one side, and we alerted the doctor that something was wrong.  He recommended we get physical therapy, but I understood him to suggest that it probably didn't have anything to do with the in utero fluid in his ventricles. Physical therapy was helpful in getting him to kneel and at physical therapy we realized that he didn't sit, use his right hand or crawl.  He graduated from physical therapy 6 weeks later, suddenly one of the best kneelers around.
At thirteen months he started knee walking.  He didn't walk on his feet until 18 months, in the midst of a second short round of physical therapy.
We decided to see the neurologist somewhere around 22 months, but because of doctor business protocols, had to wait to get an appointment to see the local family doctor before they would schedule an appointment with the pediatric neurologist, and it was right after his second birthday when we actually visited a pediatric neurologist.
Despite all the reading and preparation, her words still shocked us.  Since we described hemiplegic cerebral palsy to her exactly (and even suggested we knew when he had had a stroke), she thought we knew that term.  We didn't.  Nor did we know that cerebral palsy made Aster an automatic qualifier for SoonerStart, even though I had read the SoonerStart notices in the library every Saturday when we went to pick out books.
Early Intervention was for crack babies.  Cerebral Palsy was something entirely different.**  De Nile is de river in Egypt.

Once enrolled in the SoonerStart program, I still had to stumble across the CHASA webpage to find out much of anything, including that there were many parent-pediatrician combinations in the world just as clueless as we were.  I'll write some other time about fixing vs adapting, about a few of the types of associated guilt, and about how hard it is to "coordinate care" for a happy healthy child*** but the take home message for today is that support is available for parents of kids who have even mild hemiplegia and strokes.  If you are inclined, please wear purple sometime this month and let somebody know that kids have strokes and can have strokes and survive well.

*A lot of the CHASA moms find this one of the toughest forms of denial to deal with.  When it comes from insurance or the bureaucracy, one can fight it, but when it comes from family and friends who genuinely mean to be reassuring that your child will be "okay" it can feel demoralizing, as if you must be a hypochondriac or helicopter parent for seeking therapy and specialists for something as minor as the ability to unbutton one's pants.

**And, in my case, I already had a close adult friend with c.p. who certainly didn't fit any wheel-chair bound lower IQ stereotypes, so I should have had no excuse for having them.

***Yes, I am aware that it is much more extreme for parents of children who are also unwell and that many of these issues come up when caring for aging parents, kids of all sorts of needs, and sometimes even self.

Lilacs and Lavender: The Colors of Purple

I've been thinking of attaching a purple flower photo to every streak for stroke post.  Looking through my files I am surprised at the number of purple flower photos I've already taken, assuming one is willing to be expansive in one's definition of purple.  It seems I have photos of lilacs that are lavender; lavender that is violet; violets that are white; irises that are plum; and indigo that's plain purple.
These are the kinds of things that I think I would like to sit around and write about some day, but now that I am doing it, find I would really rather go to bed.  Someday.
In the meantime, here's a photo of the boys on Palm Sunday (notice the Hawaiian "palm" shirt).  That was April 12, the north facing lilac had been in full bloom for a few days and it lasted well past Easter when I picked the bouquet.
This lilac has a fabulous scent, and it reminds me of my parents being reminded of their parents.  I never saw (or smelled) my grandmother's lilacs in bloom, but judging by the way my parents speak of them, they must have been something outstanding. Transmitted nostalgia is an odd thing.
The lilac is also not a color I consider lilac.  Much as I like the plant, the discrepancy does bug me some.
In other garden news, some of the asparagus is purple, the west wall roses have just started, I picked my first two south wall peonies and the iris are pretty much in full bloom.

If you are here for personal stroke survivor stories, I'll link to my cerebral palsy diagnosis and in utero stroke diagnosis story (Aster's blog name was Rutherford Robinia before he emerged.  Neither is his actual name.) that will have to do until I post something new.

If you are like my father, you can be assured that Aster's hair was cut before Easter (see May 1 photo of egg dying).

Of What Sould We Be Aware, and Why?

Sparkling Squirrel is, at its best, a place for personal storytelling (and, at its typical, a place where I post photos of my kids so that my in-laws don't think I care only about books and plants), so I feel silly typing up a post about pediatric stroke awareness in general, when I know full well that any of you is capable of clicking on the CHASA link and reading their fact sheets.
I also know that most of you aren't going to read through the fact sheet, and also feel silly blogging up a streak to raise awareness for pediatric stroke without every directly addressing that awareness.

So, briefly:

Of what should you be aware:

• that kids have strokes, and especially right before and right after birth, at fairly high (but still unknown) rates.
•  that pediatric strokes are associated with a suite of other physical, behavioral and cognitive issues (more on these with my personal storytelling later in the month).
• that hand preference in children under two is not normal and should be investigated.
• that, while there is no cure or treatment for (and few known causes of) pediatric stroke, survivors of pediatric stroke may respond very well to therapy, particularly if started early.
• that pediatric stroke; causes, prevention, best practices and even basic rates of occurrence, is very poorly studied.

And why you should be aware of these things:

• because you are an inquisitive person.
• because you care about Aster and our family.
• so that you can respond more knowledgeably and compassionately to pediatric stroke survivors and their families (and perhaps to all people of different abilities).
• so that you can alert others to the signs of pediatric stroke.  Among parents of pediatric stroke survivors, a common theme is that observed delays or unusual hand preferences were not taken seriously (by doctors, relatives, or the parents themselves) and that therapies were delayed because of it.
• so that you can donate to CHASA knowing that the support network is provides is an invaluable service (more on that later in the month).

Back to my grading then gardening.  Have a great day.
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