A Walk in the Park

Back before the summer started, as I was finishing up my LEND semester, I was looking forward to the more relaxed schedule. I'd have more time one-on-one with Joy again, with Rose at summer day-camp full time and my work schedule back down to half-time.

It didn't exactly work out that way. Just after my LEND graduation, I got offered a quarter-time summer gig through my LEND contacts, working on a guide to services and supports in Wisconsin for families of children with special health care needs. I couldn't pass up the opportunity, and it's been a fine experience so far. But it did eat right back up that extra time that was going to make this summer so much more relaxed.

Fortunately, it didn't eat up all the time. And with the summer weather being reasonably kind to us so far, Joy and I have been making some fun one-on-one excursions. To the local lake-front beach. To a kiddie splash-pad fountain setup at a local park. To our free local zoo. And yesterday, to the lovely conservation park right across from the elementary school that Joy will attend in oh-my-goodness-just-about-a-month.

We had perfect weather for our outing yesterday, sunny and warm with a light breeze. The prairie flowers are simply stunning this time of year.


Occasionally I had to encourage Joy to keep walking over the rocky sections of the path (rather than dropping to stim in the gravel and rub it onto her legs.) But mostly she kept going.


And once we got to paths of mown grass, it got even easier.


The long grass at the side of the path holds its own attractions, besides giving definition to the path to keep us from straying far.


There was a park bench under this oak tree that kept us circling back to this part of the path. We sat on it, stuffed grass strands through the slats, jumped down from it, used it as a changing table! (Didn't see another soul the entire hour we were out, other than one jogger just as we were returning to the parking lot.)



What a beautiful day.

The Real Story

It matters how you choose to tell a story.

I grew up with a historian for a father and an English teacher for a mother, so I could hardly get away without picking up on this! I've been particularly aware of seeing this in action over the past couple of years as I worked on two self-publishing projects with my father. One project was organizing my mother's autobiographical writings -- how she chose to tell her story. The other was my father's biography of his parents and family. With the biography, I was privileged to see some of the selection process at work: how he organized details to support the themes he'd identified in his parents' lives, which stories he opted to present and which he considered presenting but decided not to include after all.

Of course, in blogging about our experiences with Joy, I'm doing that all the time. Choosing what is important enough to tell, and might inform or entertain or make you think or all of the above, and what's on my mind about Joy that I might appropriately process here, and what have I learned that I might usefully share with you, and what is the truth of our journey as I see it? (The latter of which may sound odd coming from behind a pseudonym, but that too is one reality of my particular mommy-blogging enterprise.)

I'm thinking about all this in context of a powerful post last week from the amazing Jess who writes of her beautiful daughter Brooke at a diary of a mom. And in fact, the title of the post was "Context." She writes of a birthday party where her daughter made some tremendous strides forward, but also sat apart from the group, with her differences written all over her face. The real story of the party, as Jess felt and experienced it, was the context and backdrop of difference. How hard it is, and will continue to be. Among several potential real stories, the hard story was the real one that day.

It resonates. (Just read the comments on the post if there were any doubt!)

And yet.

It makes me think to ask: What is the real story with Joy?

We can choose how we story-tell on a blog -- but to what extent do we get to choose what is the real story?

We've had some radically-conflicting storylines to choose from here lately. Is the real story that Joy is getting more independent with the steps in her potty routine, and happily sitting much longer in the mornings (up to 15 minutes!)? Or is the real story that she hasn't actually produced on the pot for three weeks, and that she likes to splash the handwash-water and lick the liquid soap and drop things into the toilet?

Is the real story that she continues to imitate words, and play peek-games, and generally be more interactive? Or is it the upswing in aggressive behaviors that are causing her to lash out with hair-pulling and hitting at the least bit of frustration, catching peers and adults alike in her wrath, mere weeks before she starts kindergarten?

There are absolutely moments when it feels as if the real story is all about disability and difference and struggle and heartache.

But I personally feel a strong need to choose for a real story of hope, and progress on her own terms and at her own pace, and shining eyes and giggles and playful beeps on her sister's nose. If I let myself inhabit the darker story too much, too consistently, too often -- I'm afraid I won't be the person I want to be. Nor will I be the mother she needs me to be.

What do you think? To what extent do we get an authentic say in the choice of the real story?

Sensory-Friendly Ramona

Rose and I saw a movie yesterday, something we do very rarely! The stars aligned just right: a show she really wanted to see, an open time block... and a sensory friendly showing!

I've been getting announcements for local sensory-friendly movie events for quite a while, without these components lining up exactly for us, so we'd never been to a sensory-friendly showing. We get the announcements due to our association with autism-related organizations, but Joy isn't anywhere near being able (or interested) for a feature-length film. Rose, however, has disliked loud noises since she was very young. And I often experience the sound level at a movie theatre as a sonic assault myself, especially during the previews!

So, what makes a sensory-friendly showing? At least for this one:

Sound level is turned down. No previews. The showtime is not listed for the general public in the theatre's regular listing. A non-judgmental atmosphere for viewers who need to get up and move, or do some vocalizing, or take breaks.

I don't know how attendance usually is, but for us this felt like practically a private showing! There were only two other mother-daughter families there, and though I'd tipped Rose off that people might need to move around or make noise a little more than at most showings, nobody did.

So, the movie. Ramona and Beezus.

I'd read most of the Ramona books, by Beverly Clearly, long ago when I was in elementary school myself. The books tell of an imaginative young tyke, Ramona Quimby, whose off-beat ideas and impulses get her into all sorts of scrapes, and her quiet responsible older sister Beatrice (who picked up the awful nickname Beezus because little Ramona couldn't pronounce the real thing as a toddler). I always identified more with Beezus than Ramona, being an awkward bookish older sister myself. The original line-drawings by Louis Darling -- example on the left -- are still what I imagine the characters to look like.

The movie was sweet and age-appropriate. Rose loved it, though she'd never really gotten into the books, which were a little slow-paced for her. (She preferred Junie B. Jones, from a more contemporary series of books with a Ramona-like lead character.)


The movie takes plot elements from different books -- Daddy losing his job from Ramona and Her Father, Aunt Bea's romance from Ramona Forever, little touches like Ramona "boinging" a classmate's curls and turning the "Q" in her last name into a cat from Ramona the Pest. The job-loss frame turns it into a contemporary fable of recessionary struggle and family resilience with darker themes than I was expecting, and more tearjerker moments, but with lots of humor along the way and a happy ending as a "G"-rated movie should have. Ramona herself is played spot-on.

Rose was all excited to see Selena Gomez cast as Beezus. Her mama was not nearly so impressed. Beezus isn't supposed to be drop-dead gorgeous! How can I identify with that??

Random Tuesday Thoughts

On toilet-training:
You can lead a girl to potty, but you cannot make her tinkle. (sigh)

On gardening:
Beans, beans, good for your heart! We got green beans. We got dragon tongue beans. I need to process some beans tonight for freezing.

On growth:
Joy can now reach the mantel in the living room. We used to put things up there to be out of her reach. Must create new strategies.

More on growth:
Rose started soccer practice last night for the upcoming season. When we tried on her cleats (which she was able to wear through the end of the season in May), it was like the stepsisters trying on the glass slipper. We went up two and a half sizes to get her comfy with room to grow for the fall.

Still more on growth:
When it rains a lot (and it has), the weeds in the garden go crazy! But at least it's easier to pull weeds from damp soil than from hard-baked soil.

On peek-a-boo:
Joy has created a delightful new twist on an old game. When you put a blanket up to your face for peek, she doesn't yank it down -- she lifts the other side and burrows under to join you. And then says "peek"!

On switch-flipping:
Guess what has faded back into Joy's communication repertoire. Self-biting (and to some extent, chomping others). She's doing some swatting & hair-grabbing too, and not excluding her daycare buddies. Just in time for kindergarten. Would like this to fade back the other way very quickly.

On school administration:
A new principal has been hired for Joy & Rose's elementary school. Must get him introduced to Joy. I hope he's easy to work with. Joy needs allies, especially if we're in a mode where she tips easily into intense protest...

On summer:
How did it get half over already?!

A Generic Post

In principle, I'm all in favor of saving money with no-name brands.

We do a lot of that in the grocery store. Our cart fills up with a lot of store-brand or lesser-known brands, every bit as tasty and we don't have to pay for all the advertising overhead!

Then again, there are exceptions. I happily eat the off-brand Crisp Rice (instead of Rice Krispies), packaged in the big plastic bag; JoyDad eats Mom's Best raisin bran instead of Post or Kellogg's. But I do not like the taste of off-brand Cheerios and Kix. Those two are not every-bit-as-tasty in the off-brand, I can taste the difference, and I'd really rather not buy/eat the inferior stuff.

There are some similar -- and much higher stakes -- issues with generic drugs too. In general, I'm all in favor. Health care costs are way-too-high, and generics can do their bit to help bring costs down. JoyDad and I avail ourselves of generics both for prescriptions and for over-the-counter meds.

Unfortunately, epilepsy drugs are a example of when generics aren't necessarily ideal. The FDA rules for generic bioequivalence allow for a rather suprising amount of tolerance around how well a generic version needs to match the corresponding brand name -- to make the cut, a generic needs to be reliably "within 20% above or below the blood level generated by a corresponding brand drug." When it comes to anti-epileptics, where the therapeutic dosage can be in a narrow range, that degree of difference between brand-name and generic (and possibly even more so between two different generics) can apparently be enough to mess with seizure control, to potentially disastrous results.

A recent article at Epilepsy.com has a nice round-up of recent research conducted on generic substitution for anti-epilepsy drugs, with a number of studies pointing in the direction that the differences may indeed be problematic.

There are a couple of different approaches underway to remedy this. A citizen petition was presented to the US Food & Drug Administration (FDA) in 2006 requesting that the agency address the issue of brand-name/generic substitution for anti-seizure meds. However, it does not appear that the FDA has responded substantively. More recently, in the conference report that came out with the funding bill for the FDA for the coming year, Congress has upped the ante by including the following request:

The conferees request the FDA report on adverse events and seizures associated with brand and generic anti-epileptic drugs. Specifically, the agency should examine the pharmacokinetic profiles of “A” rated anti-epileptic drugs from different manufacturers of the same therapeutic agent. The Committee directs the FDA to submit a report not later than September 30, 2010, detailing whether the agency believes that any changes to the current bioequivalence testing should be recommended.

(from FDA Law Blog)

Although -- the FDA is already on record with the belief that no changes need be made, so I'm not sure how this would impel any belief-changing (why is this about "belief" anyway?) Maybe if either internal or external evidence piles high enough, they might change the tolerance guidelines for this particular group of meds. I wonder if that's been done before.

Here in Wisconsin, there was also a push for a legislative remedy this past session of the state legislature. The bill (2009 AB 506/SB 354) would have required consent from both the prescribing physician and the patient/parent/guardian before a pharmacist could substitute generic for brand-name anti-seizure drugs, or substitute one generic for another. Wisconsin law already prohibits such a switch if the original prescription specified "no substitutions" -- and the opponents of the measure were quick to point this out. A public hearing was held, but it looks as if the bill died in committee, and never came to the floor for a vote.

As you might guess, we've had direct Joy-experience with this, two times this year now. We've been so fortunate to have finally hit the sweet spot with her meds combo, such that the scary-seizure days have receded into memory for a while now. One of her two meds has been generic from the get-go, but the other one began as a brand-name.

I knew about the substitution concerns, and so I was taken aback when I showed up for a refill at the pharmacy counter this past January and was told that our insurance wasn't covering the brand-name anymore, so they'd filled it with the generic. I pressed the pharmacist a bit, but he seemed to think that we'd be in for an uphill fight for reimbursement if we wanted to try to get doctor's orders not to switch. I went ahead and let them ring up the generic, and contacted Joy's neurologist, who said he didn't anticipate any issues with the switch. So we started in with the generic, and saw no problems, and so that chapter ended well except for being an extra worry in the back of the mind as we started in on that new bottle.

Well, here we are only six months later, and they've switched it again. This time it's from one generic to another. This time the issue was with our pharmacy's wholesaler, who suddenly made a complete switch to another manufacturer. The pharmacist was, once again, sympathetic. He had taken a continuing education session on just this issue (generics and seizure meds), knew the concerns... and couldn't do a thing for us. He did try, calling the wholesaler just to be sure that the other wasn't still available. I'm sure the pharmacist's boss wouldn't thank him for this, but he even suggested that we might want to call around and go to a different pharmacy if we could find someone else who carried it! Which we don't really want to do -- inconvenient at best, and who's to say the new pharmacy's supplier wouldn't pull the same trick in a month or two?

The legislation was well-intentioned, but I wonder it would really help either situation. It's aimed at the pharmacist, but he/she can't do anything about what our insurance will cover, nor (probably) about decisions at the wholesale level.

I dislike ending a politics-wonk blog post without a call to action. Sigh. Maybe just to think good thoughts for us as we crack open the new generic bottle, that all continues well with Joy's seizure control.

Hard to Handle

Remember back a couple of months ago, when I posted about the door handles on our cars?

The handle on the Honda Fit, Joy could easily manage. You just hook your fingers or thumb under the handle and exert moderate pressure upward. Piece o' cake.


The one on the CR-V, she was not able to operate. You have to choose the correct half of the handle, wrap your hand all the way around, and pull outward with significant pressure. Didn't come easily.


So we worked on it bit by bit.

First, I wrapped Joy's fingers around the handle for her, and then put my fingers on top and opened the door hand-over-hand.

Then, when she got the hang of grabbing the handle, I pulled on her wrist (so she had to get her grip tight enough to keep hold through the pull).

Then, I moved the pull-help back to her elbow.

Then, I started asking her to make the pull, and only helped a little.

On Thursday, Joy began opening the door on her own.

This process took several months, practicing at least every other day, sometimes every day, sometimes more than once a day. But the resulting increment of independence is a beautiful thing.

(Barbara/TherExtras, here's lookin' at you!)

Education of a Self-Taught Hairstylist

Nobody ever taught me to cut hair. Sure, I butchered my Barbies' locks as a tyke (didn't we all?) but my experience with barbering humans has been sadly lacking.

It's a good thing my girls are tolerant of my experimentation!

I started with Rose because I'm a cheapskate and didn't want to spend the money at a salon. With Joy, I'd rather fight any sensory battles at home than in a salon. Plus I'm still a cheapskate.

Here is the progression of hairstyles that started when Joy was pulling out handfuls of her hair in the spring of last year.

Somewhat shorter so as to provide less target for grabbing:

Buzzcut so as to provide no target for grabbing (and let it all grow back in evenly):

How the beautiful layers looked this summer after growing out of the buzzcut for a year:

How the layers look now, after my educational first attempt at a layered cut, so that we don't have the combing battles that the lovely long hair was starting to produce:


It could have gone better. But it could have gone worse. Joy wears it well no matter how I botch it. And, like the buzzcut, it will grow out and I will have further educational hair-cutting opportunities in the future!

A Second Look at a Favorite Post

Remember my GFCF post from February?

I've re-written it, and it's found a new home over at The Thinking Person's Guide to Autism.

New title:
When a Mom Says Something Works: The GFCF Diet

Cheers!

P.S. There's a fine collection of contributed essays growing over at TPGA. Well worth checking out.

Further Adventures Up North

What better way to celebrate a long holiday weekend than to head up north with family?

It had only been a month since our last trip, so all of us knew the drill. Pretty well, anyway. We'd thought ahead for some helpful additions such as water shoes to protect our feet from the lake bottom; it would have been nice if I'd remembered my swimsuit, though! (T-shirt and shorts made an acceptable substitute.)

We had a somewhat larger group this time, with both JoyDad's brothers (Uncle Marathon and Uncle DO) and their spouses (Auntie Save-the-Tatas and Auntie LO). Joy was delighted to discover that four out of the six adults could do JoyDad's special trick where he relaxes his face and shakes his head quickly from side to side, making a silly "blub-blub-blub" noise with his mouth. She ran from one to the other on the screen porch, grinning up at them and shaking her head to request more!

Joy also had a special connection with Auntie Save-the-Tatas, whom she doesn't see often. This auntie was the go-to gal for special kissies and cuddles. Cute as could be.

Auntie LO and Uncle DO, meanwhile, brought the entertainment with games and goodies. Rose loved the big bubble-wands they brought, just perfect for holding up in the wind on the pier and creating huge bubbles for Joy's delight:


Joy, meanwhile, got a lot of mileage out of the swim-noodles that we bought on the way:


Wonderful weekend for water-play! The weather was warm and we had sunny skies for most of the sojourn. Despite the wind on the water, Uncle Marathon could always find a place to anchor the pontoon boat for the whole crew to take the plunge. Joy discovered what fun it was to lean back in the water in her life-vest and kick with her feet. And Rose was brave enough this time to actually jump from the boat:


The lake was at least a foot higher than it was a month ago, due to some rain and a strategically placed beaver dam. This made for some fine water-play down at the pier as well:



I suppose I should report that we finally broke our flawless chain of laxa-swim events. After a less-than-ideal diaper change on the pontoon boat the first time out, we managed to have the rest of the weekend's swims without going through more than one swim diaper. Whew. And in further toileting news, we did bring along the potty insert so that Joy could practice in the outhouse. I didn't have the stamina to take her for nearly as many scheduled trips as we do at home, but we practiced often enough that she did pee out there once!

Though it seems sometimes that the lake vacations never change, this time there was a new addition, engineered by the inlaws who own the larger share of the property and spend most of the summer up there: a new, not-quite-finished shower house.



It's quite a complex system. First you have to pump a tank full of water by hand over by the old pump. Then you have to fire up the generator so the sump pump can move the water over to the tank by the shower. Then there's switch mechanisms in the shower for heat and water pressure. Fancy stuff.

Of course, it wouldn't be a lake vacation without some explosive crisis. For some reason the girls and I are always down at the lake when the hollering starts. We were splashing at the pier when Uncle Marathon's voice raised the alarm, and his brothers burst out of the cabin (one out the front door, one out the back) to come to his assistance.

Here's what exploded this time:


Doesn't it look rather like an exotic flower? Alas, this is the remains of the hot water line coming into the shower house. The tubing was obviously not quite of a caliber to take the heat and the pressure, and so Uncle Marathon got an unfortunate surprise during his shower experience! (Auntie LO was the only one who got an uninterrupted shower earlier that afternoon. Lucky lady.)

Though we were there for Independence Day, we didn't take any explosives up with us. There's been a drought up there, and we weren't interested in risking a forest fire -- though it turned out to be rainy on Sunday afternoon into the evening, so even our grilling was soggy! The gray sky was still light when we put the girls to bed, and then we retired back to the screen porch to listen to the 1812 Overture that Uncle DO and Aunt LO had thoughtfully put on their MP3 player. Just as the cannons were firing, we noticed that the sky behind the cabin was producing shades of pink. As we ventured out to see, we discovered that the sunset had produced something else amazing:


This rainbow was huge, and complete. No way to get it all on the camera. It arced all the way across the sky, and from the end of the pier we could see the entire arc reflected in the lake as well. Full circle.