Sunday, May 31, 2015

In Their Great-grandfather's Hats

Great grandparents and great-grandparents have been on my mind recently as we set out to travel to see both The Mister's parents and my parents and to meet up with each set again in far-off locales.  I want to write about how special they are to Aster and Dianthus and to write about my own much-missed grandparents, but as I look at these images of Aster and Dianthus in my grandfather's hats, I can only tear up and smile.

Saturday, May 30, 2015

The Unsightly Glow of Persistent Flash Problems

The rain was great for the roses. Well, it was great until the leaves turned black and yellow and fell off (fungal problems in Western Oklahoma!).  I had beautiful bouquets for Mothers' Day and my birthday, but have the persistent problems of being unable to ) the flash.  All of the blossoms are from our yard.  The white is mock orange.
May 11, 2015
May 19, 2015



Friday, May 29, 2015

Of Biblical Proportions

I was at crafting night last week when conversation turned to the weather.  As everyone commented that they had never seen rain like this in Western Oklahoma, one woman added, "And Noah* says we should get 2-4 more inches over the weekend."
"Noah?" asked another, clearly rattled.  "Surely, we don't need an ark yet?"

And that was before we really did receive 3+ inches on Saturday afternoon.  And more Sunday.  And Monday.  And probably Wed. and Thursday. and maybe today.  And before I was locked out of this account while traveling so I couldn't keep up the streak for stroke.  Who knows when that boat will come in handy?

*I don't think she thought it was funny that we were confusing the National Oceanic and Atmospheric Administration with the Genesis sailor, but I did.

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.

Thursday, May 14, 2015

Five Spice Rhubarb Sauce

I used some of the rhubarb Monday to make strawberry rhubarb shortcakes and the rest today to make  "Chinese Seared Pork with Five-Spice Rhubarb Sauce" from the March/April 2015 issue (a.k.a. "the rhubarb issue") of Eating Well magazine.

It was really good.  It has me thinking that 1) I should buy more rhubarb at the farmers' market Sunday and 2) I should follow recipes more often.  The rhubarb sauce and marinade had lots of ingredients I regularly use (ginger, garlic, soy sauce, honey, lemon juice) combined in a way that make them better than my typical stir fry sauce.  Sometimes following directions helps.

This has nothing to do with pediatric stroke or my current "luminescent" resolution, true, but for some reason I thought you should know that while tomatoes were declared legally vegetables by the US Supreme Court in 1893, it was a lower court in New York that declared rhubarb legally a fruit in 1947.

Wednesday, May 13, 2015

Compounding Complications

Lots of life is in the little things.  Not to discount the big things, but I know of many people who would love their jobs if only they didn't have to deal with . . . [some little thing].  I certainly haven't been the first to mention that with parenting, it is not necessarily the dealings of toddlers that wears one down, but rather the extra laundry because they snot you every time they hug you (on top of the dealings with toddlers).

Life with a kid with a disability* requires a tremendous amount of brain power devoted to the complications of the complications of normal activities.  Pants, here, are one example from our lives.  Suffice it to say I could pick many others (shoes are a big enough issue that they will merit their own post). 

We are working on potty training with Aster.  Potty training is a weird big deal for all kids and we have worked very hard to make it not feel like a big deal with Aster.  But everyone knows it is. So we have something that is oddly emotionally charged already.
Because nothing says "potty training post" like
an image of a lilac (April 5, 2015)
Then there is the idea that we do not know how Aster perceives the need to "go".  Based on other kids' experiences, the sensations are probably not "balanced".  He definitely feels heat, cold, pain and tickling differently on his right extremities compared to his left; it is likely that internal sensations are different.  Of course, he's only experienced what he has felt.  He cannot articulate what he's feeling, even if he were aware that it is different.  So we don't stress about the fact that he is still in diapers. Not a big deal.
Aster also has quite the ability to "hold it", which has led to large volumes of pee pouring out suddenly mid-afternoon.  So we always have spare pants handy and size him up in diapers (rather than pull-ups) to catch that volume,  Not a big deal.
Both Aster and Dianthus are skinny, so we need to buy pants that have the super adjustable inner waistbands inside in order for their pants to stay up .  This make pants more expensive, as most cheap brands don't have the adjustable inner bands and most thrift store pants have lessened elasticity. Since both grandmothers are on alert for Gap and Levis pants on sale (thans M and MiL!), this is not a big deal.
New pants falling down in the morning light
(and flower garden) May 3, 2015
Aster cannot manipulate zippers and buttons.  This is not a big deal because he is 3 and he needs someone to help him anyway, since he is in diapers.  Or he can just wear elastic waist pants.  Except that the hand-me downs from his brother that fit have adjustable inner waist bands. They are nice pants from grandparents that button and zip. "24 month" regular elastic waist pull-on pants will stay on Aster.  Which wouldn't be a big deal if he weren't taller than the average 44 month old.  The pants that stay on look like manpris.
In order to practice peeing independently, Aster needs to be able to pull down his pants himself and pull up and down a pull-up.  So, elastic pants and pull-ups.  Not a big deal.  Except above.
While I am sorting out his pants for the summer, I keep thinking that maybe I should be adding little loops to pants to make them easier to manipulate one-handed.  Then I am caught in a never-ending argument (of which I can easily hear both sides in my mind),  One side is totally for loops (and velcro shoes and magnetic snaps and every other device that will make dressing easier).  Early success leads to greater independence leads to more lasting success, this side argues.  In response, the other side argues, "so, are you going to sew loops on pants all his life?  Doesn't he need to learn how to do it right the first time rather than just putting off frustration?"  That side has a point, I acknowledge, but the other side quickly counters, "we don't even know if he will ever have the fine motor skills to push buttons through button holes-- why would you increase frustration and delay independent dressing over a skill he might never have?"  Adaptive vs. coddling?  Frustration vs. independence?  Work with the abilities he has or encourage development of new abilities?

I'd like to be able to do laundry without debating the nature of ability, disability, and alternatives. But I don't.

There are always extra little decisions and those decisions have consequences.

Aster has been peeing on the potty for three days in a row.  It's a big deal.
 
*I rarely think of him as a kid with a disability, but every other phrase I considered putting here felt even more off.  
As always, I do not pretend to have insights into lives of all parents with kids with hemiplegia, much less all disabilities.  However, I have had enough conversations to know that many parents cite the all the little things, and the big consequences of little decisions, as an area where they feel frequently misunderstood. 






Monday, May 11, 2015

On Fixing or Not Fixing Righty or Not Righty

I speak about "CHASA moms" as if they constitute a united force, which is hardly the case.  CHASA moms express differences of opinion about home schooling, vaccinations, essential oils, Common Core, and botox; and sometimes they can't even agree on the definition or "stroke" or "hemiplegia," (for fairness sake, I should point out that neither can the medical community).

"Righty" rarely gets as cold as "lefty"
April 2015, Colorado
I'm a little surprised that a current conversation about therapy being "worth it" has not become more heated, as several posters have commented that it definitely was not worth it for them, on a post started with a cute graphic suggesting that therapy is always worth it.  "It" is not defined in this case, but could be a measure of time, of money, of lost opportunity, of extra fighting and misplaced priorities.

The problems with assessing therapy are the obvious lack of replication and lack of control. Aster is much much better at running, drawing, and telling long stories now than he was a year ago.  He's also 3 and 3/4 rather than 2 and 3/4.  One of the remarkable things about reasonably fed humans is that they grown and learn at an astounding pace, where or not they have a neurological impairment.  Sure, the therapy may be doing wonders, but so might school, chasing his brother, cooking with dad and gardening with mom. Or just time.

Beyond the big time/money/priorities problems that therapy might not be work, there is an idea floating around that it is psychologically detrimental.  By suggesting someone go to therapy, one is suggesting that something is "wrong" with him or her, and that he or she should be "fixed," or at least "righty" should be fixed.

An earlier heated debate came about because of the use of "righty."  "Righty" is apparently going to scar young children, who should learn that they are in charge of all of their limbs, none of which has a personality of their own.

Crazy semantics or is there something there?

Sunday, May 10, 2015

God wants me to eat rhubabrb

The Mister bought rhubarb at the farmers' market yesterday and asked how to prepare it in ways other than pies.  A few hours later I stumbled across a previously unseen copy of Eating Well among the newspaper recycling-- the special "rhubarb: it's not just for pies" issue. Clearly we are meant to eat lamb and rhubarb.

I keep trying to re-phrase this and it keeps coming across as the set-up for a completely not funny joke: what do mothers of kids with hemiplegia, cancer patients, and women grieving through infertility or loss on Mothers' Day have in common?  [Answer] They do not want to hear, "Everything happens for a reason," or "God only gives you what you can handle."

I told you it wasn't funny.

Over and over this has been coming up in conversation recently.  Perhaps because I read a lot of "Things Not To Say to Parents of Kids with Special Needs" lists*, perhaps because I just discovered the blog of my former pastor as she deals with her own infertility issues on Mothers' Day, perhaps because I have friends in all of the categories: having recently lost a child, wanting and not having a child, undergoing chemo, and having recently lost a parent, but it seems rather obvious to me.  More power to the people who do find a way to learn and grow from every stumble on "their journeys".  But really, in the midst of struggles, whether intended or not, these statements end up sounding like, "God wants you to suffer."

I have a hard enough time interpreting obvious signs (the rhubarb issue had been in the recycling stack for months before its eerie appearance on the very day we had fresh rhubarb) without trying to seriously divine the divine.  I don't know how it works.  I honestly don't think I can know.  But I'm pretty sure that whatever ills may be befalling you, it is not because God wants to see you suffer.

I better quit before getting myself in theological trouble.  We haven't made anything with the rhubarb yet.


*Also high on the list for kids with hemiplegia in particular, "Well he looks so normal," and, "At least she is adorable."







Saturday, May 9, 2015

The Streak for Stroke Backstory

If you are visiting because my mother asked you to (thanks Mom!), or for any other reason, welcome.

I've maintained this blog since January 2007 as a place to write about 1) my theme/resolution of the year (this year it is "glowing", 2014 was "roots" and 2013 "acid", for instance) 2) books I've read 3) my garden and 4) whatever else I feel like (which often includes my family).  During May (pediatric stroke awareness month) I am blogging almost daily in order to spread the news about pediatric stroke (see the last week for reasons why) and alert people about support available through the Children's Hemiplegia and Stroke Association.
Rocky Mountain Penstemon
May 4, 2015

My sons have code names on the blog.  Dianthus and Aster are 5 and 3, and, at times, can be very charming individuals. Scroll down (or on the next page to April 30) to see for yourself. They are also, as mentioned, 5 and 3, so can be very short on charm for long periods.

Aster had a stroke in utero (you can read about the craziness of finding out months before he was born here, and by following other posts with the "Rutherford Robinia label). I first wrote about his diagnosis with hemiplegic cerebral palsy here in September 2013 and then blogged a great deal about it in May 2014.

Through personal storytelling, I'm hoping to answer questions about pediatric stroke, so if there is something that you want to know, please ask.

The Pilgrims are coming!*

Running to the Farmers'
Market in the FOG.
May 9, 2015
We followed indoor graduation procedures this morning because of the fifth day in a row of real rain.  One of my graduating seniors commented that she doesn't remember this much rain since, well, ever. During a downpour in late April, a new faculty member asked, hopefully, "They say that spring is the rainy season here?" to which I had to respond, "This is my fifth year here and I haven't experienced a rainy season."
Two weeks later and I have now experienced a rainy season. The local paper reports that we haven't had this much rain in a 30 day period since the 1920s.  Last week's drought monitor had us downgraded to "severe" drought (and who knows, by Tuesday our drought might just be "moderate").

Even before the recent deluge, it was a great year for the roses all over town.  Peonies were blooming places I've never noticed them and mine are finally growing up.  I claim not to be a rose person or a pink person or a frilly, fu-fu person, I make exceptions for bouquets of May flowers**.  Images are of a bouquet I picked Tuesday, May 5 and took to Texas.  I also picked one here yesterday, that includes additional deep rose-colored peonies that are just starting to open.

Happy Rain!  Happy Flowers!

*"If April showers bring May flowers what do Mayflowers bring?  Pilgrims!"

**While I still have no images of my famous former peony parties, one can see images of my May flower fanaticism with peonies up close,  or a big West Virginia bouquet.

Friday, May 8, 2015

To pay for all of those "Kandu"s (why I advocate part 5 of n)

One of the reasons I'm blogging this "streak for stroke" is to help fund raise for the Children's Hemiplegia and Stroke Association (CHASA).
CHASA is a small, small budget organization.  If the "one handed shoe tie challenge" that we've been talking about went viral like the ALS ice bucket challenge, the volunteer administrators wouldn't know what to do (but I'm sure it would be a nice problem to have).  CHASA programs are all focused on a simple goal: helping families of pediatric stroke survivors* and most are similarly straight-forward. They include (but are not limited to):

  • Connecting families virtually and in person to trade tips, victory stories, and shared gripes in order to help combat the isolating feeling that nobody else quite "gets this".
  • Serving as an information clearinghouse for diverse topics from "how to phrase bi-lateral coordination such that it is an educational goal" to "are there ANY shoes wide enough to fit over an AFO?" 
  • Connecting research studies with potential participants and funding pilot studies.
  • Setting up a shoe exchange.
  • Providing grants for orthotics not covered by insurance.
  • Providing small scholarships for college and professional schools/
  • Sending stuffed penguins to children with hemiplegia and asking the children to create appropriate orthotics for it.
I'm well aware that stuffed penguins are not solving world hunger, but I have watched the CHASA Facebook feed and have been in tears over the obvious joy when some of the kids unpack their kandus.  I've shed even more tears looking over the photographs of kids with their penguin in a matching orthotic who are crazy-excited to see the photographs of the other kids with their penguins and their braces, because it means that they are not alone.

If you were to financially support CHASA, you could do it be setting CHASA as the recipient of your Amazon Smile page or by donating directly to Megan's Birthday (no, I don't know Megan) or any of the other Crowdrise pages.


*Hemiplegia is one sided-weakness.  It is a set of motor and muscular problem that results from brain damage. If the brain damage was before 2 years of age and is non-progressive, then it is often diagnosed as cerebral palsy.  Not all kids with hemiplegia (or hemiparesis or hemiplegic cerebral palsy) had strokes, and not all pediatric stroke survivors have hemiplegic, but among the CHASA families, kids with both is the largest single group.  Aster had a stroke in utero and was diagnosed with cerebral palsy right after his second birthday.

Thursday, May 7, 2015

Because empathy is contagious (why I advocate, part 4 of n)

Sometimes transmission of empathy and compassion is completely rational: my grandfather started recognizing good things about China after my mother introduced him to a friendly, intelligent Chinese woman who smiled at his stories.  Learning from CHASA parents about struggles with students forming letters, I've asked a colleague to reconsider the spaces she provides for essay questions.  I donated more quickly to relief efforts in Nepal just because I am connected to the people of Nepal through an occasional facebook friend.

One never knows what insects the flowers have endured.
Baptisia Summer 2014 (?)
It's a long road.  One never knows what is just over the hill.
Better stop and make some funny faces along the way.
Sometimes it makes very little sense.  There's no particular reason a blog post here should resonate with a friend whose daughter is struggling with reading or that watching friends deal with health issues should make me feel more kindly to students who can't be bothered to come to class, but it did and it does.

Contagious compassion can be irrational, but I think it is always personal.  Knowing that something exists is unlikely to change anyone's attitude; a good story might.

So this is why I advocate for pediatric stroke awareness. I'm here to share our stories, and I hope that they might make readers a little more alert to the daily struggles going on around them.  And that that alertness might translate into treating everyone (oneself included) with a healthy dose of empathetic compassion.  And, who knows?  I


t might spread from there.


Tuesday, May 5, 2015

They're learning something in grade negative two

"Mommy, did you know that a pterodactyl is a flying dinosaur?" asks Aster this morning.

This comes just a few weeks after he came home with a navy blue partially inflated balloon in a 2 liter bottle.
A: "We made baby arugula at school."
Parents: ??
A: "We made baby arugula at school."
Parents: ??  "You made baby arugula?"
A: [Exasperated sigh.] "Yes.  And a mommy. It has a blow hole" [Produces a whale of a stuffed white sock.]
Parent: "Is it a baby beluga?"
A: "Yes.  Babies are blue and mommies are white. They all have blow holes."

Aster loves developmental pre-K (officially -2 grade on the paperwork) and he is apparently learning lots, along with his physical, occupational, and speech therapy.  Beluga, arugula, almost the same thing.

Monday, May 4, 2015

To help you find CHASA or your own CHASA (why I advocate number 3 of n)

I'm blogging up a streak to raise awareness for pediatric stroke in case you stumbled upon this blog, desperate for a community of parents also dealing the uncomfortable unknowns of raising a child with hemiplegia, hemiparesis or other symptoms of childhood stroke or mild cerebral palsy.  If so, look no further and click on over to the Children's Hemiplegia And Stroke Association (CHASA) webpage.
Does anybody really "get" prairie turnips?
[Kansas, May 2013]
While that scenario seems unlikely, I became aware of CHASA when I googled "two handed-toys" in the fall of 2013 and ended up here on a personal blog from someone else's May "Streak for Stroke", so it certainly is within the realm of possibility that your search is as circuitous.

I'm also here to encourage you to find your own CHASA.  Most of us are dealing with some thing (or things) that other people just don't "get".  Among the many wonders of the internet is the ability to connect geographically disparate people facing similar issues.  Among the CHASA community there are countless stories of relief, of lonely and bewildered parents feeling just a tad better, because they can share with the CHASA community that "gets it".  If you need a CHASA, please find your CHASA.  Someone else "gets it."
 

Saturday, May 2, 2015

Because not everyone with a brace has a broken ankle (why I advocate number 2 of n)

When well-meaning folks ask Aster, "Oh, did you have an owie?" Aster does not realize he's being asked, "Why are you wearing an AFO?*" nor, the few times we've been asked, do I, at least not immediately.  Weird pauses have ensued

With AFO Nov. 2014
June 2014
Explaining that he did not recently injure himself is not a big deal in our lives, but I know many CHASA parents and adults with hemiplegia tire of the questions, and some parents fear casted constraint therapy** just because they don't want to deal with queries about broken bones.

King of the Hill, Nov. 2014
Helping people understand that there are many reasons for braces, casts, gloves, and supports***, and that assuming recent injury can be awkward is a small reason for why I'm raising awareness about pediatric strokes, but it one.  I can recognize "When is he going to get that off?" as a kindly-meant conversation starter, yet I can see how tired mothers of kids who may be wearing AFOs for life see it as a trigger for defensive outbursts or tears. Some would rather pretend injury than deal with the embarrassed pity that can accompany, "actually he had a stroke/cerebral palsy/permanent brain damage and has worn braces since he was 2."
As you can see from the images, three-year-old Aster does not lead a life requiring pity, even with his oh-so-fashionable supports.



*Ankle Foot Orthosis

**The non-affected ("good") hand is casted so that the child must use the affected ("bad") hand and develop new neural circuitry and new muscle memories.

***Not to suggest that I am an expert on all of the many reasons.

Friday, May 1, 2015

Because it's not like breast cancer* (why I advocate, 1 of n)

Pediatric Stroke Awareness month begins today and once again I am planning a "Streak for Stroke" and will be blogging up a storm (at least 20 days in May) in hopes of raising awareness of pediatric stroke and hemiplegia and directing people towards the CHASA (Children's Hemiplegia And Stroke Association) website and support services.

Not that long ago, someone in the CHASA Facebook community asked if it was bad that she didn't want to be an advocate during the May purple-wearing hoopla the CHASA community has been gearing up for.  Of course simply having a child with hemiplegia doesn't mean one needs to pass out flyers door to door (or, in fact, do anything but take care of one's child), but the ensuing Facebook conversation made me try to articulate why raising awareness is important to me.  The first few blog posts of this streak will deal with the many reasons I want to do this.

First and foremost, the population is really not aware of pediatric stroke.  Even health care professionals can be surprised that "kids have strokes, too."  This is a problematic state of affairs, when an estimated 1 out of every 2,800 children in the US is a stroke survivor and early intervention may be key to better long term outcomes.  Kids cannot receive help for conditions they have not been diagnosed with and parents and health care workers cannot seek help for conditions they don't know exist.

A purple flower each day is my symbol for the streak.
This is a Stokesia at a history museum near Topeka.
So, if you know of someone with a baby who is demonstrating strong hand preference (typically not using one at all) before the age of one, suggest they read up on the other symptoms of pediatric stroke (available, among other places, on the CHASA web page) and make sure they are dealing with a pediatrician who will take concerns seriously.

You may not have known that kids can have strokes, sometimes before birth.  Now you do.  That's one reason I advocate.  Many more reasons to come.


*Even before last October, you probably already knew that cancerous cells can spread in and around breasts.  I'm very for promoting research into early detection, prevention, and treatment of breast cancer, along with programs that improve the quality of life of breast cancer patients and survivors, but I cringe about some of the corporate over-pinking during "breast cancer awareness month" as if most of us were already not aware (or all too well aware) of breast cancer.