On Becoming a Therapy Mom

As the Mister and I were deciding where we will lunch we when visit the orthotist in Norman in two weeks and I was debating the merits of thera-putty as a backseat toy on the upcoming road trip, I realized that I had become one of those moms.  The kind of mom who honestly believes her kids' activities are her hobby. "We do pageants," or "I'll see my friends between the school basketball season and the tryouts for the traveling team." The kind of "soccer mom" pollsters covet or "dance mom" that Lifetime uses for bad-looking television.  Except right now I'm a therapy mom.

Since I gave finals a month ago, I've made five trips to "The City" for medical appointments (four for Aster and one, thankfully unnecessary, for me), we've had three in-house appointments with the SoonerStart program and a formal Individual Assessment Plan meeting with the school.  We've got appointments upcoming in Norman and Denver before school starts again and we still need to get everyone to the dentist and to get his or her shots.  I've lined up some swimming and gymnastics with intention that they are therapeutic (but mostly because they are fun) and you should see the bag of tricks (including ace bandages and shaving cream) I bought for "CT Time" (constraint therapy).   We're "bear walking", big ball rolling and stretching daily.

Dianthus and Aster one-handed for first day of
home "CT Time"**

Compared to many of the CHASA parents, our therapy schedule is mild.  Many families are seeing physical therapists and occupational therapists weekly (or more) from a few months old.  Many also do speech therapy, some behavioral- hippo- vision- aqua- or other therapy,
and I was very sad to learn that most constraint therapy camps I heard parents talking about are not cool camps in the woods filled with kids whose good arms are in casts, but rather month-long day camps in medical buildings (with kids whose good arms are in casts).  I hope the reason that Aster hasn't had this sort of intensive therapy is because he hasn't needed it (the affected areas of his body seem limited), but I also know that living in a small town, lack of services, lack of anyone coordinating services and laziness of parents have all contributed*.

Aster is less constrained than originally intended

The scary thing is that we have no idea what's the right amount.  Aster has some use of his right hand and is an amazing compensator. Some of the people working with him have taken this as a sign that we are doing the right things and shouldn't stress, as he will clearly figure out ways to do what he wants to do.  Others see it as a sign that we could do so much more. Clearly he has some sensation and some motor control in his right hand.  If we act aggressively now, he might be able to re-wire his neural circuitry and learn to really use that hand before spasticity, lack of coordination and plain bad habits make disuse permanent.

Recent research (and lots of anecdotal evidence) suggest that mind-body connections are more flexible and repairable than previously thought, but that the extent of this plasticity varies greatly with age and with type of damage.  Typically, brains less than four years old tend to be the most malleable.  If Aster is going to have greater use of his hand, it is going to be because he discovers control of it now.  Or it may be because he decides to play saxophone to impress some girl when he is sixteen.  Nobody really knows  But we have a little control over the former scenario. So it's time for one-handed finger-painting tomorrow and stringing Fruit Loop necklaces all the way to Branson.

*And Mom, no need to remind me that I'm not lazy, but thanks for thinking it.

**Dianthus did really well just using his left hand.  Aster, well, he's more wiggly.  In these pictures we were playing with shaving cream and food coloring on the bathroom walls.

***And yes, I am fully aware of how lucky I am that I have job, finances, husband, transportation, mental capacity, and insurance that make these things possible.  I am very very fortunate in all of those regards.

I think I am ending the Steak for Pediatric Stroke 2014 here.  Thanks for reading.

The streak continues

We just returned home this evening and I find myself with lots more to say and no desire to blog about it now.
So I'll end May with some more photos of purple flowers and a link to the wonderful Pediatric Stroke Awareness Montage that CHASA put together.  I will provide insights into (my) life with a pediatric stroke survivor at a later date; check back.

If you are in the donating mood, CHASA just gave scholarships to summer athletic activities for kids and is preparing for the big family retreat.  It really is a great all-volunteer run organization and would put your money to good use.

Hot radish! Ooowuw!*

The Mister and I just photographed and ate the black radish from the no-longer dirty grocery store in East Lawrence. The knobby black exterior is thicker and wartier than a standard pink radish and the interior seemed whiter, more solid and less pithy, while being overall much more intense.  Heat without pith or bitterness.  It was quite something,

In a few short moments since, I have learned that there exists an award-winning children's book entitled Black Radishes that I clearly need to read, that black radishes are available in a pill form to "support internal organs", that black radishes are also known as Spanish radishes, but were most commonly grown in England and France in the 19th century, and that Oaxaca, Mexico celebrates the Night of the Radish on Dec. 23, AND SO SHOULD WE.  [Information sources: book on Amazon; pills from google search; random facts from Wikipedia (main "Radish" entry); and capitalized conclusion entirely my own.]

*This represents the sound James Brown makes following "Hot Pants!" or, more precisely, the sound that the Mister taught Aster to make following "Hot Tub!" in the style of Eddie Murphy parodying James Brown.

Not flat

I married into a family with roots deep in the Smoky Hills of Kansas. The land is stunningly beautiful, especially on a late May evening watching the swallows flit over the pond as the sun sets behind the hills.  Not smoking, definitely hills.  Perhaps I love it more because so few people will ever experience it.

Black radish at dirty Dillon's

In Lawrence, Kansas, the old neighborhood grocery store was known as dirty Dillon's in my time here. Went by today and found in the produce section: horseradish, turmeric, striped beets, taro, Hawaiian sweet potatoes, a random type of giant turnip (bo pok or something) and black radishes. The last we bought.  Report later.

Friends, finances and other casualties

Dr. Darla Clayton blogged about how raising a special needs child destroys one's friendships.  I have not found this to be true.  I didn't have any friends locally before I became pregnant with Aster so there were no friendships to be destroyed.
"Wait," you protest, "I'm your friend."  Of course you are. And you were either a friend from some earlier (e.g. childless) time in my life or you are a virtual friend.  Chances are I have not hung out with you recently.
I moved from a small town where I didn't know anyone to a bigger small town where I didn't know anyone when Dianthus was one.  I immediately started a demanding job and then shortly thereafter became pregnant, so tired that I watched Wheel of Fortune every night and worried that I would fall asleep before the one year old (see some of the posts labeled "Rutherford Robinia").  At 42, I'm a full half-generation older than most of the day care moms.  I'm a generation younger than the women at the Christian Women's Fellowship group at church.  My friendly colleagues go out every Friday.  It only took once of laughing about the idea of, spur the moment, getting home, getting a sitter, magically feeding and instructing the sitter, not seeing my kids for the day and spending the evening with colleagues, before they quit asking us to join them.  But losing time with one's friends is a typical symptom of parenthood (A Morning Grouch describes it well here).  I've found it far more pronounced with two than with one (and I crave, more than about anything, a friend that I genuinely want to talk to with kids the age of my kids who can totally understand the necessary constant interruptions), and I hope that I am not losing my long-distance friends long-term just because I don't have blocks of time to talk longer than fifteen minutes and I so cherish my sleep.
Anyway, I don't think Aster's hemiplegia diagnosis has done disastrous things to my friendships, but as I read the stories of other CHASA moms, I understand how it could have.  Many pediatric stroke survivors have more issues than the poor use of limbs that Aster has.  When kids have sensory or behavioral problems, may or may not be communicative and may have seizures, it is really hard to take them any place, and almost impossible to find (or pay for) good sitters.  Some mothers of hemi-kids* hate being around other kids the same age because it emphasizes just how far behind the "hemi-kids" are.  Some worry that other kids will make fun of their hemi-kids.  Some worry that their sensory-seeking hemi-kid will bite.
And then there is the time.

One CHASA mom recently added up that she spends 27 hours each week with activities just related to the hemiplegia diagnosis (appointments, special classes, at-home stretching, therapeutic activities and the like,  I don't know if she included arguing with insurance billing or advocating for special ed. or not).  While I do not spend anywhere near that, the time beyond what a "typical" child takes can be costly.  It can take a toll on friendships, time with siblings, and financially.

More on the financial costs later.

Thanks for being my friend and for still being my friend if I didn't thank you properly for your last gifts, if I haven't called you in forever, or if I cut you off last time we did talk because my sons were in a "Baby! Baby! Baby!"  "No, you're the baby!" "I'm not a baby, you're the baby!" shouting match.

*Apparently the first name of CHASA was "Hemikids" but the connotation these children are half-kids was a little off-putting,  It is the term of choice on the facebook feed, but it does give me pause.  Of course, I wonder, if Aster is half young goat, what's the other half?

Big fish

Dianthus and his grandpa caught a twelve pound channel cat today.
Picture soon (or soonish, I'm out in Kansas for a while).

[Relevant to nothing, other than Streak for Stroke, Dianthus's grandma is wearing a fantastic "I Heart a Pediatric Stroke Survivor" t-shirt today.  If your daughter didn't get you one and you want your own, you can order them for another week from the CHASA website.]

Planted!

We left town yesterday for a big Kansas vacation (plus hand therapist appointment and field work), so, of course, on Thursday I had to read page proofs, take Dianthus to swimming lessons, post two summer jobs and deal with HR paperwork, mow down the weeds, and make a new garden bed.
Thursday I planted bronze fennel, dill, rosemary, agastache, Texas hummingbird plant (?), Mexican something or other vine, catmint, rocky mountain penstemon, ornamental salvia (East Friesland, perhaps) and some sweet potatoes in the front butterfly/cottage garden (mostly in the new bed).
In the back I planted some colorful annuals (a tropical hibiscus, vinca, coleus, verbena, new guinea impatiens, a few snapdragons) and some more herbs (basil, oregano, thyme, rosemary and a mystery mint from the Asian grocer).
In the last two weeks I had added substantially to the prairie planting: three Maximillian's Sunflowers, three switch grass, three muhlies, red salvia, liatris, baptisia, butterfly milkweed, swamp milkweed, and a goldenrod, and Thursday stuck in a butternut squash is the spot o' death.
I'd also added to the cottage butterfly garden on several earlier occasions this spring.  I planted candytuft, foxglove and columbine that I used for plant taxonomy class as well as baptisia, cardinal climber, verbena bonariensis, and red hot pokers.
Thursday the Mister planted some vegetables in the raised beds. I stuck some taro and some sweet potato slips into an earthbox until I find a better home for them, and the boys and I sprinkled grass, sunflower and okra seeds in advance of the rain Thursday night.
Many of the plants had been languishing as we waited for an acceptable time to plant them.  Some of the perennials were greenhouse raised and we were forewarned not to put them out if nights might be cold, as they were the 14th and 15th.  Then it jumped to 90s and windy, also less than ideal conditions for baby plants.  It is forecast to rain 4 of the next five days.  We'll see what they look like when we return home.

Feeling Traitorous

Sometime on Monday Raymond Cronos Darcy was rolled away into the sunset to provide money for a local NPR station and hopefully provide someone else with needed transportation (either in whole or parts).  I'm feeling traitorous because I barely took time to feel sentimental and am mostly happy that the view of my flower beds is now unimpeded.

Raymond had 169, 789 miles on him, and, as of this fall, would have been as old as my incoming freshman.  I bought him 11 years ago a few weeks after meeting the Mister.  While I never bonded with Raymond quite the way I bonded with Naz, Raymond was a great field companion and a really solid car.  He made it to the Pacific in 2004 near Portland, saw Atlantic salt water near Williamsburg (2009) and Annapolis (2010) and traveled over 8,552 miles with us on the great road trip of 2007.

I'm feeling a little sad that I can't say that he'll be missed.

The Never Ending Paper Trail

Having tucked the kids into bed this evening, I contemplated blogging about almost-special-education, or tucking myself into bed, when I realized that the cake Dianthus, Aster and I baked for Dianthus's end of school year birthday celebration tasted bad and had an odd underbaked hole.  I've always wondered if baking soda and baking powder were really functionally equivalent.  Now I know.  They are not.
So, as I was throwing together a second cake, I remembered that Aster's enrollment packet for the three-year-old program needs to be completed by tomorrow and we just received a bill for blood work done in February that perhaps I should look into.
The cake is baked, the packet is done and I'm avoiding the hospital bill for another day.

For being a laid-back kid, Aster requires a great deal of paperwork.

So far very little of Aster's paperwork has been contentious.  We did have a small run in with the insurance company last summer when they told us that the diagnosis code for one visit was an exclusion.  The nice woman on the phone tried to get me to get my doctor to call for codes of similar but included diagnoses in the future.  I was too stunned (and too worried about the next-step specialist appointments) to argue on basic logic.  It makes sense that some treatments are excluded.  It does not make sense that an initial diagnostic visit might or might not be covered depending on what the diagnosis code at the end is ("You'd better not go see the doctor about that cough.  If the doctor decides it is bronchitis insurance covers the visit, but if the pneumonia box is checked, it's all you.").  This practice is even more ridiculous when neither patient nor doctor has access to list of excluded codes until after the paperwork for the visit (that may or may not be covered) has been submitted.
The bill I intended to investigate this evening was for three-hundred-some dollars for lab work in February.  I had previously received two EOBs (explanation of benefits) for seven-hundred-some dollars for this lab work (or possibly seven hundred some for the lab work and seven hundred some for the office that did the blood draw).  They each had different billed totals, stated that insurance was paying nothing and that I owed nothing.  So a three hundred dollar bill four months later is not much of a surprise.

None of this is anything new to anyone who has had a health issue. Medical bills that are impossible to correlate with actual treatments because of vague coding practices happen all the time.  Hospitals, doctors, insurance companies and patients all manage to screw things up*. However, given the number of visits and numbers of practitioners Aster may or may not see, the chances of hitting a screw up in any given year go way up, as does the possibility of a screw up having a cascading effect.

And then there is the school paperwork. And the legal documents that must be signed before we can see the school paperwork, every time.  And the early intervention forms in triplicate.  And the paper notices stating that I have been notified over the phone.

Compared to lots of kids with hemiplegia, Aster's files are slim.  He sees relatively few doctors.  His parents read English, have insurance and get along with each other.  This is not always the case.

CHASA has a few pages about financials and legal issues, should you want to know more about what other parents are facing.

*Dianthus's first doctor's mother stopped me on the street in our small West Virginia town, demanding payment (well, reminding me to pester the insurance company, yet again) one time.  It seems baby Dianthus needed medical attention before the insurance had records of him, because he could not get on the insurance roles until he had a social security card and he could not get a social security card until he had a birth certificate and the state would not send him a birth certificate until I signed another paper stating that Dianthus's father and I were married, as I had previously indicated on the application and approved on the draft copy of the certificate, yet had different last names.

Cake

Some of you asked for photos.  Here's the birthday cake in progress and complete.
This was constructed following recipes in Tish Boyle's fabulous volume: The Cake Book.  With a minor exception of not owning a stand mixer (and leaving out a bit of rum and adding some strawberries on top), I actually followed the instructions for Coconut Meringue Cake pg. 294 which included Whipped White Chocolate Coconut Ganache (pg. 319) and Bittersweet Chocolate Glaze (pg. 306).  I've written about The Cake Book before (mentioned here and here and the shamrock cupcakes were made using the Devilish Moist Chocolate Cake recipe, a cocoa and hot water based-recipe which has become my go-to for chocolate cakes) and once again, it did not disappoint.  The end result was not very cake-y, after all, it is flour-less, and tasted like a giant coconut macaroon.  I was pretty excited, and the whipped white chocolate coconut ganache was a revelation.
The boys are pretty cute, too.

Back to pediatric stroke awareness tomorrow!

Reading Roots

Thanks to the Mister and some wonderful friends, I have more chances to root around in the kitchen.

Returning to my roots

The boys and I are baking a special cake for my birthday tomorrow (May 19). Somehow, like making super-dark chocolate cupcakes with green shamrocks for the day care St. Patrick's Day party, baking a layered coconut-almond dacquoise with whipped white chocolate coconut ganache and a bittersweet chocolate glaze seems true to my roots, despite being the kind of thing that neither of my grandmothers would ever have done.

What's right with Aster?

Besides being inquisitive, good-natured, and sometimes outright adorable, what's right with Aster?
Why, he has the giant diakon.
Surely that's enough.

Educating practitioner seven and a half

A future physical therapist (pt) was being trained at the Medical School Rehab Center last week when we took Aster in to see the hand therapist (trained as an occupational therapist, ot).  The musculature on Aster's hand is apparently different enough that the hand therapist called the future pt over to show her his hand, and how this particular shape of clenching is characteristic of prenatal stroke survivors, and is just like the one other boy she (the ot) has seen with the condition.  The future pt seemed surprised. Whether she was surprised that embryonic humans have strokes, that survivors of such strokes can be as charming as Aster, or that survivors of such strokes need therapy for specific hand muscles, I am not sure. She started asking questions and a few minutes later, both the future pt and ot knew some of the signs of pediatric stroke and that there are support resources out there.  I didn't have my CHASA cards with me.*

What surrounds us feels commonplace,
and we can forget how extraordinary it is.

Aster has been seen by his family physician, a local physical therapist, two local physical therapy assistants, a pediatric neurologist in "the city", a coordinator for the early intervention program, his "early interventionist" (a physical therapist), an occupational therapist who came to two of his early intervention sessions and suggested we see a physiatrist and then informed us that there were no pediatric physiatrists around, an occupational therapist who specializes in hand therapy in "the city", a physical therapist in training, and four people who evaluated him for the school program**.

Almost every one of these people has suggested that Aster could benefit from seeing some other professional or doing some other therapy (suggestions have included botox, aqua therapy, constraint therapy, physiatrists, and orthotists) but almost none has suggested anyone doing such therapy near us.

Exactly one of these people suggested we look into CHASA.
We still have work to do in pediatric stroke awareness month.

Kids can have strokes.  There are resources for families of  survivors of pediatric stroke.  Spread the word.

*The CHASA cards don't exist, but I really would have liked some sort of card to give these people, "If you ever see another kid with a similar set of symptoms, send his parents here."  How would you phrase such a card?

**First IEP meeting tomorrow morning.  The paperwork continues.  Wish us luck.

What to do with a giant radish

Evidence that the people I know are right for me:  I was e-mailed a photo stream (these are only the highlights here) of a lonely dragon daikon escaping a house and people helping drive it to the creek to be with its own kind, right after I asked what I should do with a daikon.  I'll admit that setting free a restless dragon had never occurred to me as a way to utilize a large root.  This is why I need all of you.  

If the artists would like credit, they should let me know.

What's wrong with Aster, and how do you pronounce it?

By and large, CHASA parents don't like being asked "What's wrong with Kid X?" because it implies that Kid X isn't right, needs fixing, is broken or wasn't as God intended (by and large, they also dislike being told that "Nothing is wrong with Kid X," but that's a subject of some other posts).  But something is wrong with Aster, otherwise I wouldn't be fighting him to put on a stiff night brace or driving 80 miles each way for a hand therapist appointment, and I wouldn't be raising much awareness through my blogging streak if I claimed otherwise.

Well, clearly something is wrong.
Perhaps The Mister gave him the wrong cup?

Available evidence suggests that Aster had a stroke while I was pregnant.  It was somewhere before 23 weeks, and probably after 18.

As a result, he had an enlarged left ventricle when measured by ultrasound at 23 weeks in utero, and an MRI done at age two shows that he has scarring around his left ventricle, consistent with a prenatal stroke.  

As a result of the stroke and related brain damage, he does not use the right side of his body the same way that he uses his left.  He was slow to crawl, slow to walk, and rarely uses his right hand.

This non-progressive permanent movement disorder falls under the general heading of cerebral palsy (CP). Specifically, he has "hemiplegic infantile cerebral palsy" with a more recently added note about "cerebrovascular accident with right hemiparesis."  The "hemiplegic" suggest that only one side of his body is affected and the "hemiparesis" suggests that he has weakness on one side, rather than actual paralysis.

Hemiplegic can be the least debilitating of the many types of CP, and Aster seems less affected, at least so far, than many others with similar diagnoses.  Childhood strokes and CP are associated with cognitive delays, sensory issues, balance issues, emotional processing issues, seizures, hip and shoulder problems and a full slew of other potential complications.  We have evidence for a few predictions, for instance, according to the pediatric neurologist, the location of Aster's damage makes it less likely that he will be prone to seizures. Good predictive factors, however, seem few and far between.  Human neural connections are remarkably plastic, but we don't know how much where or when the damage occurred matters.  We know that some CP patients have remarkable success treating "symptoms" while many others just don't. "Neurotypical" three-year-olds have a hard enough time recognizing when it is time to "go" that we just can't ask our child with hemiplegia if his unwillingness to use a potty is because one side of his body feels different than the other.  

As a mother, I'd like a better gazing ball (more on that later).

As humanity, we need more information so that we can better help kids with CP, whether or not something is wrong with them. 

By the way, I tend to go full blown American and say "suh-REE-bral" but "ser-uh-bral" is also acceptable (and I'm fine with seruble as well), if that matters to you.   Hemiplegia= "Hemi- plee-GEE-ah" if I can't get around it and "hemi-puh-lee-gic" which I know is just wrong, but is closest to how I would pronounce "quadriplegic".

Also, by the way, I think Aster is just right, even though there is something wrong with him.

What do you do with a daikon the size of your arm?

. . . when you have three others waiting in the kitchen?

When we went into "the city" for Aster's hand-therapist appointment on Friday, we stopped by the Asian grocer, the nursery and ate Thai food, because that's what we do in the city.  So we bought some daikon, and feeling crazy into the roots, bought two, one for pickling and one for kimchi.
A day later we picked up our Bountiful Basket order and it contained two large daikon, including one so large that it won't fit in the refrigeration.  Photos after I decide what to actually do with these.  Suggestions welcome.

And in the meantime, I urge you to enjoy the Adapted Kitchen Blog-- cooking tips and product reviews by a nine year old with cerebral palsy.  He has tackled daikon yet, but I'm sure he will someday.
Purple flowers are my symbol of the Streak for Pediatric Stroke (the purple ribbon is from the Children's Hemiplegia and Stroke Association), not significant of anything in particular.  We are long past crocus here.  Our iris bloomed last weekend and dried out in the winds of the last two days.  The roses are going full force and the new (planted by me over three years) peonies on the front (north) side are blooming.  The south side peonies shriveled up sometime during the week.

"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.