Tuesday, September 30, 2008

Cause and Effect

In my last reflection on Joy's brush with craniosacral therapy, I mused about doing a post on cause and effect. Here 'tis.

It strikes me that there are two sides to cause and effect when it comes to how we evaluate what's going on with Joy's health and development. One has to do with what's going awry; the other has to do with what's going right.

I'm particularly interested today in the "what's going right" side of things.

We're trying different treatments and interventions with Joy all the time, in an elusive journey toward improvement / healing / wholeness.

There's the allopathic medicine side of things, such as the combination of strong medications we've brought to bear on Joy's epilepsy. We carefully track the seizures against the dosing. Funny thing here: the three times that we've almost gotten to a month without any knock-down seizures don't seem to correlate very directly with dosage changes, and yet without the meds we'd be in big trouble. (The one time that we tried to back down the dose of one of the two meds she's currently on, the seizures increased dramatically).

There's the non-traditional medicine side of things, like we tried with the craniosacral therapy, various attempts to bring healing through correcting flows of energy and such.

Then there's the educational realm of interventions that we're tweaking all the time, between three therapists from the school district. The intensive autism therapy I should perhaps put with the medical side of things, but the day-to-day interactions have a lot in common with what we're doing with the school district and we deliberately coordinate the two.

Then there's the fact that Joy continues to grow and mature.

What a complex and fascinating endeavor, trying to facilitate (and evaluate) all this potential growth/healing!

And somewhere, woven between all of this, is faith and mystery and miracle.

Some Boggle-playing friends of mine at church had an amazing experience lately that relates to this.

Their middle-school-aged son dislocated his knee earlier this month, a painful injury. The doctor was able to manipulate the knee back into place with quite a bit of effort, but it wouldn't stay -- it was popping back out with a fingertip's worth of pressure. The family requested the prayers of the congregation as they scheduled their son for surgery.

The day of the surgery arrived, the son was prepped for the procedure and placed under anesthesia, and then... the surgery didn't happen. The surgeon reported that the knee was back in place and healing well, staying put even when he pushed at it. Nothing in the literature suggested the possibility of that course of events.

"Are you religious?" the surgeon asked the parents.

There is much about the causes & effects of healing that is beyond our knowledge. I'm continuing to learn about being open to a range of healing, however it may come.


Thank you to Barbara at TherExtras for precipitating this post. I hereby submit it for inclusion in her upcoming blog-carnival on healing, scheduled for October 6.

[Additional note: the mom of the lad with the inexplicably-healed knee did give me explicit permission to post the story!]

Friday, September 26, 2008

beyond.words: Joy's Grandpa Reviews a Dance Premiere

Joy's grandpa, my father, sent me an e-mail the other day about a world premiere dance performance he had attended this weekend, together with Joy's grandma. We talked about it the following day, and the conversation & e-mail are blended together in the words below.


On Saturday evening Joy's grandma and I went to Wichita State University for the world premiere of a new dance work titled "beyond.words." "Beyond.words" was created to raise autism awareness.

It was a deeply moving experience.

Seven performers from the New York dance company "dre.dance," joined by seventeen performers from the Wichita State University dance program, performed the work. The hour-long work portrays the life of one person on the autism spectrum, from youth to manhood to middle age. The dance movements are based upon repetitive motions, stimming activity, wild running, etc. typical of autistic persons.

We recognized a lot of what we have seen in Joy. Having chased Joy up and down the hallways at church, I almost laughed to see seven or eight dancers running full tilt across the stage and then dashing back. At times I thought I was feeling what it might be like to be inside the brain of someone with autism, there was so much going on.

Some of it was strange and frightening. Much of it was beautiful. It brought us to the edge of tears.

The creators of the new work are Andrew Palermo, a dance master, and Taye Diggs, a Broadway-movie-TV star. Palermo has been artist in residence at Wichita State University for the past year.

In a talk-back session after the peformance, the dancers spoke with enthusiasm about their visit to a local autism therapy facility where they had done part of the work and been received warmly. The work intends to "raise awareness that autism is not something to be 'cured' but to be accepted."

Palermo and Diggs plan to take "beyond.words" on a national and world tour next fall. Anyone with concerns or connections to persons on the autism spectrum would be enriched by seeing this show.


UPDATE: I've found another blog-review of beyond.words that goes into more detail on the story-line of the work.

JoyMama again -- my father also pointed me in the direction of an article in the Wichita Eagle from the day before the performance, with more interview goodies from the show's creators.

He said that there has been some criticism of the work to the effect that it glorifies autism, making the strange and sometimes-disturbing movements of autism into beautiful dance and turning it into more gift than burden. To which I say... what a lovely corrective. We could use to see more of that facet of the complex truth that is autism. It helps to counterbalance the bruise-and-bite side of things!

I wish I could have been there, and I sure appreciate the review and the chance to share it. Thank you to my father for being so attuned to life with Joy, and for contributing to the blog as well as faithfully following it!

P.S. Several things I've read recently, of which the review reminds me:
Dancing in the Window by rhemashope at Autism in a Word
The Supercharged Brain by Kristina at Autism Vox
Where He Lives by Emily at A life less ordinary?

Thursday, September 25, 2008

Elvis Makes a Birthday Appearance

JoyDad got a birthday card that needs to be shared.

Velvet Elvis birthday card

Have a hunk-a, hunk-a birthday cake

Even better: the black background on the Elvis photo is velvet-fuzzy!

Thank you, dear extended-family-members-who-don't-yet-have-aliases (but you know who you are).

UPDATE: OK, they've got aliases now. Full credit to Auntie Run-at-the-Mouth and Auntie Meerkat -- thanks for a most excellently appropriate birthday card!

Wednesday, September 24, 2008

Photo Wednesday: Chomp.

What you are about to see looks like documentation of abuse.

But we didn't do this to her. I promise. She's doing this to herself. With her teeth.

Self-inflicted bite bruises on Joy's arm and leg

Joy's such a sensory kid, plus she's got a ridiculously high tolerance for pain, plus she's recently stopped grinding her teeth when she stims, plus she has a lot of therapists filling up her days for the past couple of weeks. I think there's something in these aspects put together, with some click of some internal switch, that has resulted in Joy chomping on herself. She does this particularly when she is angry or frustrated, as in "Come on Joy, let's go change your diaper." I try to take her hand, she doesn't want to go, and all of a sudden she's dangling from my hand by one arm and her knee is up in her mouth and she's biting down hard. It's clearly enough to make her feel pain at the time, as she lets out a loud wail when the bite stops.

We've been trying to offer alternate chewing stimulation with therapy chewies and good chewy food. It would be great if she'd re-direct the bite into a chewy-toy instead, but she strikes like a snake and there just isn't time to insert a chewy in between her teeth and her arm.

Jeans and long-sleeve shirts would blunt things somewhat, but we've been topping out past 80 degrees with a lovely bit of late summer weather.

She's done some biting of adults too, but usually we can get out of the way. When the biter and the target are the same person, though, and she doesn't want to get out of the way, you get the results that you see in the photo.

Joy's occupational therapist is making inquiries as to whether the Wilbarger "brushing" protocol might be applicable for this situation. We used the brushing/joint-compressions back when Joy was not quite two years old, and aren't sure it was a lot of help back then. We need something to try now, though. Maybe brushing is it.

Meanwhile, if anyone else has dealt successfully with this kind of thing... let us know! We could use some positive thoughts / vibes / prayers on this, too.

Monday, September 22, 2008

I wonder what it would be like if...?

Joy's older sister Rose, age 6, had a lot going on this past weekend. First we had the camping trip, and then after we got back on Sunday and had lunch, she had a playdate with a classmate from school. When she got to her friend's house, another classmate was there too, and then her friend's little sister (about Joy's age) woke up from nap and the four of them ran around like crazy.

Later in the evening, Rose talked me into watching a bit of football on TV with her instead of our usual bedtime reading. (Is she her daddy's daughter, or what?) As we watched, out of the blue, she suddenly said, "I wonder what it would be like if Joy didn't have autism and epilepsy, and she could play with me more."

I figured out right away that this was coming from the playdate experience with her friend's little sister, and Rose confirmed that this was what she'd been thinking. I was happy that my voice stayed steady as I agreed, yes, that things would be different.

And then I mused that it would probably be different too to be like her best friend who doesn't have a sister or brother at all. Or to be like one family we know where there are something like 6 or 7 years between the older brother and the Joy-aged brother. Yes, Rose agreed, that would be different too.

Then she came back to Joy, and she reminded herself (I didn't even have to say it!) that she does play peek-a-boo and chase with Joy, and that they do have fun.

And then Rose said that even if things were different, "I would still love her anyway."

And then the ref threw a flag and the conversation turned back to the football game, and she hoped the flag was against the Packers.

Sunday, September 21, 2008

Two Versions of a Tent-Camping Story

Each fall, our congregation reserves a couple of group campsites at a state park and we gather out in the woods for a loosely-planned weekend of fellowship and camping. This year was the first year since Joy's birth that we've actually dared to try & tent-camp overnight as a family. Herewith, the campout story.

The Diagnostic Version

We almost didn't go. The night before we were going to drive up to the park, Joy woke up crying THREE times. This never happens. She almost always sleeps through, and if she does wake, she usually stims and babbles herself back to sleep, rather than crying loudly. JoyDad reported that on one of the occasions, she was grabbing at her head. Plus, after the third waking, we gave her ibuprofen and then she finally fell asleep for the rest of the night.

We suspected ear infection. She's had quite a few, though it's been a while. It's very hard to tell, though, because she has an enormous pain tolerance and an out-of-kilter sensory system and doesn't have the language to tell us when something hurts. She had just the slightest edge of a fever. So I took her in to Urgent Care when they opened for the morning (of course this always happens on a weekend, right?)

Well, Joy's ears were clear. And her throat looked fine. And her mood was improving by the minute. So when I got her home from the check, we packed up and went.

It turned out to be a lovely time. We set up Joy's PeaPod travel bed inside the tent, where she took a nice afternoon rest and then slept the night without complaint. She didn't really do any dashing at all, nor did she try to play with the campfire. Instead, she ran around within the confines of the camp area, but deliberately kept looking back to interact with whomever was tailing her. She also managed to come on a bit of a hike with me and a couple of friends. And she ate well, and smiled a lot, and generally did great.

Oh, and no seizures, though our party-count-clock has been set back with a night-time seizure last week. (Which shouldn't count. But I think it does.)

So why did the campout go so well?

1) Maybe she's settling in to a recent epilepsy-meds dosage increase.

2) Maybe having had a whole summer to experience a backyard fence has helped reduce her urge to dash.

3) Maybe the intensive autism therapy is starting to get her into an increasingly interactive mode, which we'd love to credit for some of the wanting to be with people.

4) Maybe we just hit it lucky with a good-mood weekend.

And maybe I'm wayyy over-analyzing this and should learn to live in the moment! So, here goes again:

The In-The-Moment Version

We were so happy to be able to go camping with our friends from church, after briefly thinking that we wouldn't be able to go.

It turned out to be a lovely time. We set up Joy's PeaPod travel bed inside the tent, where she took a nice afternoon rest and then slept the night without complaint. She didn't really do any dashing at all, nor did she try to play with the campfire. Instead, she ran around within the confines of the camp area, but deliberately kept looking back to interact with whomever was tailing her. She also managed to come on a bit of a hike with me and a couple of friends. And she ate well, and smiled a lot, and generally did great.

Oh, and no seizures!

And I got to play Boggle with friends (and with Rose) by lantern-light after Joy went to bed.

What a blessing and a Joy.

Thursday, September 18, 2008

Spin, spin, spin

Hurry, hurry! Step right up! See the amazing plate-spinning extravaganza by the world-renowed JoyMama, and her super-partner JoyDad!

In her right hand, her children!

See her coordinate Joy's school district therapists, intensive autism therapists, daycare, medical visits, and church Sunday-school/nursery volunteers, in between lots of hugs and play!

(spin, spin, spin)

See her coordinate Rose's homework and piano practice, hear her secrets, patch up her boo-boos, teach her to hula-hoop, read with her nightly, get her to school, coordinate other parents to bring her home, volunteer in classroom & school library, and maintain the PTA website!

(spin, spin, spin)

See her clothe, feed, medicate, bathe, diaper, brush teeth, organize playdates, chauffeur, and toss the spinning plate back and forth to JoyDad for his share of the fun!

(spin, spin, spin)

In her left hand...

See her clean house, take on the leaky faucet, schedule plumbers and exterminators and heating specialists, and split laundry and cooking and dishes and shopping and bunny-litterbox duty with JoyDad!

(spin, spin, spin)

See her garden and harvest and process and freeze and pickle and can, and toss this plate back and forth to JoyDad as well!

(spin, spin, spin)

See her rehearse and perform with a top-caliber community handbell troupe, and maintain their website too, while JoyDad takes full kid-care duty during those hours to make it happen!

(spin, spin, spin)

See her at church, getting there almost every Sunday, occasionally even leading Sunday school or preaching!

(spin, spin, spin)

Then on her chin...

See her in her professional life, working half-time as an academic librarian!

(spin, spin, spin)

Then on her forehead...

See her with her extended family and friends, in person and online, e-mailing and visiting and phoning and blogging!

(spin, spin, spin)

And all of this while riding the Unity Unicycle of Marriage, two shall become one and it's quite the magnificent ride, but marriage too takes ongoing attention and balance -- like the super-secret presents and the homemade cheesecake for JoyDad's birthday yesterday!

(Pedal, pedal, pedal)

Lately, all the plates have been spinning well.
Unusually well. Ta-DAHHH!

But my goodness, whatever would happen if she...

oo shoot...
'scuse me...
tickle in my nose...

ah, ahhhh, ahhhh....A-CHOOOOOOOO!

* * * * * *

This post, except for the sneeze, inspired by a performance of the Peking Acrobats that Rose and I saw last winter (wobbly YouTube footage is not mine, but you'll get the idea).

Every conscientious parent with small children does his or her own version of this. Every special needs parent has extra plates in the air. A big pat on the back to every plate-spinner who reads this!

Wednesday, September 17, 2008

A Special Day for JoyDad

Born in the same year as Barack Obama...

Older than Sarah Palin...

More years till retirement than Joe Biden...

In a whole 'nother generation than John McCain...

It's JoyDad, and today is his birthday!

JoyDad's confirmation photo, looking angelic back in 1969
Still a charmer after all these years... Happy birthday, my love.

Special Exposure Wednesday: Where's Joy?

Where's Joy? Wheeeeeere is she? Wheeeeeeeere's Joy?

5 Minutes for Special Needs

Sunday, September 14, 2008

In the Moment

Well, that was quite a swing between my All Lit Up post and my Regression Analysis post. I'd say sorry for being such a downer in the latter, but... it is what it is. Talking about Joy's regressions takes me to dark places, and that's part of the way things go sometimes around here.

On the other hand, the regression part of Joy's journey also has something to teach me about living in the moment, if I let the lesson sink in. If I worry too much about the future and the next regression that might (or might not) be around the corner, there are many glorious Joy-moments that might not get the appreciation they deserve.

Like all the peek-a-boo games yesterday!

One of Joy's intensive autism therapists was the first to elicit it, a week ago. Joy has always loved peek-a-boo games, and has been pulling the blanket away from our faces to peek for a long time now. Last week, though, the therapist reported that Joy held up the blanket TO HER OWN FACE and did a peek! Turn-taking, imitation, initiation, social awareness, all in one tasty package!

Joy showed off her new skill a couple of times during the past week, with great big grins and giggles. Then yesterday, she decided it was her favorite new thing to do. We spent long spells peek-ing, sometimes at my initiation, sometimes at hers, sometimes between Joy and JoyDad. She was enjoying holding up that blanket so much, I sometimes had to playfully grab it away to get a turn in edgewise!

My favorite interaction, though, was at one point when I came upstairs and she initiated the game, holding up the blanket to peek. Then she came over, took my hand and put it into the blanket, thereby asking me to take my turn...

Oh yes, there are some glorious moments here, when we're willing to live in them.

Saturday, September 13, 2008

Regression Analysis

Regression. Possibly THE most frustrating aspect of Joy's development, for me anyway.

For those not living in autism-land themselves, it might surprise you to learn that big regressions are not necessarily a part of the autism trajectory. The most highly-publicized autism stories (especially in the "what causes autism" controversy accounts) often involve a great big regression at some point in the first two years of life. The child retreats into him- or herself, becomes withdrawn, loses language, almost seems like a different person -- and when the stunned parents go looking for a diagnosis, autism is what they discover.

While this is definitely one piece of the autism story, it is by no means what everyone experiences. Some kids with autism don't regress at all, others plateau, others show symptoms from the beginning and then regress, others have multiple regressions over time. There's a nice round-up of several studies on autism-related regression in a June 2008 IAN Research Report (the Interactive Autism Network, sponsored by Autism Speaks). One of the studies they cite found 46% of their sample of kids on the autism spectrum had experienced regression, but only 30% of those reported normal development up to that point. Another study with a stricter definition of regression found regression in their sample in only 11.8% of children with autism and 5.5% of children elsewhere on the autism spectrum.

Joy's in the "early symptoms" and "multiple regressions over time" categories.

I blogged in July about the "early symptoms" (When Did You First Notice...?) We definitely had a whole cascade of symptoms before we hit a regression, from language problems to interaction deficits to sensory issues, with whipped cream and seizures on top.

The first regression was subtle enough that we didn't catch it in progress. Sometime in late fall of 2006, at the age of 2 1/2, Joy started losing words and started ramping up with behavior issues. The timing was probably pretty good, if you can say such a thing, because we'd been waiting for an appointment with a prominent developmentalist who specialized in autism, and the appointment was Dec. 21. That's when we got the autism diagnosis, and the doctor pointed out autism issues left and right. She chastised me for having filled out forms describing Joy in far too glowing terms, and told me that I'd better mend my ways when applying for intensive autism therapy, because you have to paint the bleakest version of truth to have the best chance of getting the therapies you need.

And let me digress here to say what a soul-killing reality this is, on an annual basis or more, for parents of kids with special needs. At least every year for the school district, and sometimes more often than that, we have to focus on what our children can't do, in order to advocate for them and get them the best services we can. How screwed up is that?!

Anyway. The doctor also chastized our Birth-to-Three representative, who was so kind as to accompany us to the appointment, for not recognizing the autism. We all felt rather wrung-out by the end of the appointment. Merry Christmas 2006 to all!

What we hadn't yet put together was that Joy's first big regression had been happening between the time I filled out those forms and the time she got the diagnosis. The most obvious piece of the regression was that she went from about 80 words to about 20. Even that, though, can be hard to track. Think about it -- if you're even keeping track of your kiddo's words for the baby book, you write them down when you start hearing them, and then you consider them mastered. What you don't anticipate is that any utterance of that word might be the last time you hear it for goodness-knows-how-long. When do you realize that you haven't heard that word for a while? In a week? In a month?

Our tracking system got much better when we started a private Yahoo! group for Joy and started trading daily updates with Lynda the daycare lady, wherein I also began describing the Birth-to-Three therapy sessions. In this way we were able to track how Joy came out of the regression over the course of the summer. Then in the fall she started with the school district and those therapists started contributing reports of every session to our lovely online archive, documenting some very nice progress. We were back up over 80 words, starting to do some color matching, stringing chunky beads, beginning to stack Legos....

And then came Christmas 2007. This time we saw it right away, though it probably was only a little more extreme than the first time. It happened over Christmas break. Joy started losing words again, wouldn't tolerate being in the Sunday school classroom, had a behavioral down-spiral. In February 2008 we think she had a virus that made things even worse.

Good things have happened since then, for sure. Joy has begun to lead people by the hand to what she wants. We've established some nice new helper routines. Some words have come back (like ma-ma-ma-ma-ma!) She re-entered the Sunday school classroom in June. She has begun to initiate peek-a-boo games. Much to be happy about!

On the other hand, we haven't seen the level of language recovery that we did the prior summer. And Christmas is coming again in three months...

That's the worst of it, I think. Christmas is coming again, or we may see a regression sooner, or maybe later, or maybe never again. And we never know, from day to day, whether this day will be the last day that she says ma-ma-ma for the next year. We can't take any gain for granted. And that's very, very hard.

The IAN report I linked to earlier was also reporting on its own data collection about regression. Very unscientific, not peer-reviewed, self-selected respondents, self-reported information. However, despite all those caveats, there was this fascinating chart, with the big question on the chart in red:
IAN Research Report June 2008: Line Graph showing age at time of skill loss

In other words, maybe someone will start taking notice of late regressions, or multiple regressions? Maybe there's some fodder here for future research, instead of focusing autistic-regression research solely on those big initial regressions, which, devastating as they are, by no means tell the whole regression story.

Thursday, September 11, 2008

All Lit Up

You know that the school year will get off to a good start when...

You tell your school-district team leader the name of your autism-therapy senior therapist, and her face lights up, and she says something to the effect of, "Oh good, we've worked together before, she does a great job and she runs her meetings so well too."

And then,

you tell your autism-therapy senior therapist the name of your school-district team leader, and her face lights up, and she says something to the effect of, "Oh good, we've worked together before, she's great to work with and has such good ideas."

The world needs more of that kind of light!

We are finally getting closer to having a full schedule with Joy's intensive autism therapy, plus this was the first week for her of seeing all three of her school district therapists, who work on an itinerant basis, coming to work with her at home and daycare. Joy's pushing back a little bit about all those hours spent with adults bugging her to be interactive and DO things, I think, but I'm hoping that she'll get used to the full schedule before too long.

Meanwhile, one more thing that's making my face light up -- since September 1, we've been on another string without knock-down seizures. Target date for month-a-versary party: October 1. We shall see.

Wednesday, September 10, 2008

Photo Wednesday: God evry Where

Just when I was thinking that Rose (my neurotypical first-grader) had been zoning out in Sunday school and was doodling during worship and nothing was sinking in, she turned and handed me this:

Love may be always with you. Peace is with you. God evry Where.
They're listening. They really are.

Sunday, September 7, 2008


The young gazelle darts away from the wildlife researcher, back into the savannah. Her new radio-transmitter tag obviously annoys her slightly, but soon she will ignore it and continue her routines as usual...

Joy's Project Lifesaver ankle bracelet
Joy's been tagged! We're fortunate to live in one of the counties offering Project Lifesaver, a locator service for people at risk of becoming lost and not having the wherewithal to get themselves found again. Here's an article I linked to in a prior post, talking about the partnership between Project Lifesaver and law enforcement.

We had to call our local sheriff's department to start the process. We set up an appointment, and this week two deputies came out with the equipment and a stack of forms to fill out. It's always interesting when forms try to cover multiple situations (in this case a range from kids with autism to elders with dementia or Alzheimers) -- some of the questions can be laughably inapplicable!

In addition to the bracelet on Joy's ankle, about the size of a women's digital wristwatch, we were given an ID number and transmitter-frequency number. In case of an escape emergency, we're to call 911 and tell them that we're with Project Lifesaver. If we didn't happen to have the numbers on us, they could look them up, but having the numbers saves a few moments of time. We also got a small battery-tester device, that we're to test the anklet with once a day and record the results. Then at the beginning of each month, we have to pay a visit with Joy to the sheriff's department, turn in our testing log, and get a new battery and band. Batteries should last 45 days, but they change them monthly to be sure, and you get a new band because they have to cut the old band to get at the battery.

Joy didn't like getting the band put on, and tugged at it a couple of times the first evening, but since then has pretty much ignored it. I was glad to see that it wasn't as big a device as I was fearing. It would be less publicly noticeable if she'd wear it on her wrist like a watch, but I think she'd probably be biting at it all day. We're going into fall weather anyway, so it'll be invisible under long pants except at swimming lessons and such (yes, it's waterproof!)

There are consumer products on the market to do this kind of tracking, such as Ion Kids, but in our county at least, Project Lifesaver is grant and donation-funded for now, and also gets us that partnership going with law enforcement first-responders.

So leaving aside our speedy radio-tagged gazelle, there's another kind of tagging I wanted to address. For my family readers who don't inhabit the blog world on a regular basis... I've discovered that there's a practice among bloggers that has a bit of a chain-letter vibe to it, where bloggers get a set of fun questions and answer them in a blog post, and then "tag" several other bloggers that they'd like to see playing the game as well. (Here's an example from Trish at Another Piece of the Puzzle.)

Premio al esfuerzo personal blog awardBloggers also can recognize one another's work and create links to their favorite reads by means of awards. I was recently recognized by Barbara at TherExtras with the "Premio al esfuerzo personal" for "excellence in the expression of values in a blog". The values in question in this case, as defined by the award giver: "movement [as in body, not the other b-word], personal responsibility, politeness, acceptance, words used well, and love." Thank you Barbara! I'm honored!

I'm also going to break the rules, because what I'm supposed to do is post the rules that go along with the award, and then pass the award along further. I'm going to respectfully decline the opportunity, with thanks. In general, I figure not to participate in "tagging", mostly because as I said yesterday, my post ideas are outrunning my time. If you do tag me with the fun-questions sort of thing, I may answer in your comments, but probably not on my blog.

However, I can't finish this particular post without also acknowledging having received another honor, one that I don't have to feel guilty about not passing along because it's all mine! In honor of our meeting last week, Mama Mara says, "I officially dub JoyMama as Mama Mara's goddess of freaking miracles." Much appreciated, Mama Mara -- you rock, too!

Saturday, September 6, 2008

Closing the Craniosacral Files

Joy's craniosacral therapy journey so far:

Whose Woo Do You Do?
Woo, Take 2
JoyDad's Thoughts on Craniosacral Therapy
Update to the Craniosacral Files (Woo, Me?)

Yesterday Joy had her third and last craniosacral therapy session. In our story so far, we originally began this treatment with a set of initial concerns we thought CST might address that included biting, teeth-grinding, her intense need to chew, sleep issues (taking a long time to get to sleep at night plus waking up too early) and her stimmy intensity.

At yesterday's session, Joy pretty clearly recognized where we were as we drove up, and was happy to be there. She almost danced through the door, and gave the therapist (we're calling her H.) a great big grin. I think she wanted to play "chase" with H, and it started right away with a bit of a chase to get her to move from the waiting room to the therapy room.

Once in the therapy room, Joy pulled out some stimmy toys and H began following her around and doing her light-pressure "holds" on Joy, each time for the count of 10 if Joy would let her. Like the last session, the focus was on head and abdomen, though the last session's abdominal holds were pressing up into the diaphragm and this time she was working lower. She spoke of getting some sort of release in Joy's ileal valve. For Joy's head, the releases again had to do with heat in the cranium and generally loosening up the craniosacral flow. Once again, H. had to follow Joy around the room and work with her on the floor, and Joy (happily) attempted escape most every time but didn't bite or struggle nearly as hard as she's capable of.

One question on my mind was the strange fact that Joy's been having on-and-off low-grade fevers lately, which started before the CST but the last two times have occurred within a day or two after her CS sessions. Yes, that can happen, was the answer, as the body releases heat or "de-toxes". Part of a self-correcting mechanism, and if it happens it's usually only the first session or two. I'd have bought the explanation much better if H had said something about the possibility in advance... but she hadn't.

Another question on my mind, this one partially prompted by a comment from Barbara at TherExtras: why the schedule of treatments every two weeks, when I heard that another practitioner in town starts out on a schedule like weekly or even twice per week? She said that she used to start out with more frequent sessions, but had come to her present approach through the experience that a longer wait gave her clients' bodies a better chance to take full advantage of the self-correction that the CST enables. She said that she eventually became convinced that treating too often was actually interfering with the self-correction, stirring things up that were best left alone for the body to work out.

She said that the things she'd worked on with Joy in earlier sessions were still doing fine (the neck & hyoid bone, the diaphragm) and that if we had been interested in coming back, she thought Joy was in balance enough that she'd next want to see her in a month.

I was very open about the fact that we'd just not seen enough effect in Joy that we could attribute to the CST, to keep us interested in coming back. Especially in the areas of the biting and the stimming, there just hasn't been any relief. The only thing that has improved really is the night-time sleep, and maybe a little less teeth grinding, but the rhythm of those improvements don't really make sense with the timing of the sessions. With as complex a kiddo as Joy, it's very hard to know what change affects what outcome, and we're tweaking various therapies all the time. I think I'll need to do a whole separate post on the dilemma of trying to suss out what cause matches what effect. (Aacck, I've posted just about every day this week, and my list of post topics is still growing beyond the pace I'm writing them up! This can't last.)

H was not at all fazed by my report of not being able to identify improvements, or our decision to stop treatment. She said it sounds like we're doing good work to address Joy's ongoing sensory issues, she still felt good about what she said she'd accomplished with Joy's system, and she encouraged me to keep in touch if I had any questions or wanted to give things another try later. I liked her a lot, and can see why she's got such a loyal following. I think I'll miss her.

As far as post-session affect on the day of treatment goes, Joy has been different every time. First time was giggly/smiley, second time was stimmy/cranky, yesterday was mischievous and boundary-testing. She got cranky again before supper, but later in the evening mellowed out and she & JoyDad got some nice happy playtime.

So, case closed on the craniosacral files. What a fascinating ride! Thanks for tracking it with me.

Friday, September 5, 2008

My favorite new old word

After having lost 75 percent or more of her words in a regression last Christmas, Joy has retrieved another one from wherever it was hiding.

And she's using it with purpose.

It's "ma-ma-ma-ma-ma."


Thursday, September 4, 2008

It's a small, small world.

It's a world of laughter, a world of tears,
It's a world of hopes and a world of fears,
There's so much that we share, and it's time we're aware,
It's a small, small world.

So two mamas, both with kids on the autism spectrum, start blogs in the summer of 2008. Both are feeling the need to reach out in some way to others out there who might be able to relate.

Both mention that they're from the same state. They find one another's blogs and start commenting back and forth.

Eventually one e-mails the other and says, hey, where exactly are you?

"Exactly" in this case is: within walking distance.

The amazing Mama Mara's son Taz went to the same school as JoyMama's daughter Rose last year.

Mama Mara Herself
Anybody want to calculate odds?

Mama Mara came over for coffee this morning, met Joy, we chattered a mile a minute and kept finding more weird and awesome things in common. (Key phrase of the day: "Oh, shut UP!" as in "you cannot be serious!")

I am so psyched to have my awesome local community grow in this awesome way. Did I say yet that this is totally awesome?

There's so much that we share, and it's time we're aware, it's a small, SMALL world!

P.S., added a few minutes later: Oh, shut UP! Now you've got to go over to see what Mama Mara wrote about this encounter. I promise, we did not coordinate our stories on this!!! (Otherwise I'd have been as good a comedic writer as her. A girl can dream, right?)

Wednesday, September 3, 2008

Tuesday, September 2, 2008

Not Knowing What You Don't Know

I gleefully blogged a little while ago about ditching Joy's ratty old cloth diapers (of course we saved them for primo rags!) in favor of disposables funded by Medical Assistance (MA), which are delivered to our doorstep.

The other side of that story is more forehead-slapping than gleeful. Joy actually qualified for Medical Assistance in April 2007, when we went on the waiting list for the intensive autism therapy that she's finally now receiving. We were excited to qualify because we thought we'd need that support to fund some therapy in between the time she aged out of Birth-to-Three (May 2007) and the time she got picked up by the school district (September 2007). But then we actually got our regular insurance to cover speech and occupational therapy for the summer. The only things we ended up doing with that MA card were that Birth-to-Three pounced upon the chance to bill MA instead of absorbing April & May's therapies themselves, and that we got a discounted annual membership to the local children's museum.

Then July 2008, when we came to the top of the waiting list, we got a new county caseworker. In our first meeting, she told me that MA would cover the co-pays for Joy's epilepsy meds, plus now that Joy was four, diapers would be covered too. Well, we hadn't missed too many potentially-covered months on the diaper front since she just turned 4 at the end of May. But the co-pays, that we'd been ponying up all this time! It turned out that we even could have back-billed those co-pays for an entire year, but for the fact that we'd been good consumers and had used pre-tax dollars through a Flexible Spending Account. So we couldn't go back and double-dip.

How do you know what it is that you don't know?

I went to a wonderful informational meeting the other day. It was held at the agency that runs our town's Birth-to-Three program, and featured a speaker from our Regional Children and Youth with Special Health Care Needs (CYSHCN) center. I'd never heard of the center before, or at least hadn't remembered it due to its awful crunchy unmemorable name. However, it turns out that it's a government-funded information service (read: no cost for the call) where parents can call to learn about local resources for their kids with special needs. The resource person gives you suggestions about available services, and then follows up with you later to see what success you've had accessing those services.

There were 5 moms around the table, having kids with different challenges and different ages, all avidly drinking in the information and taking notes and collecting handouts. Then we started exchanging information too, and things really got rolling. I learned the names of local epilepsy-support contact people, and that MA may pay for travel & lodging if you have to travel for a necessary medical service, and about a medical ID bracelet with downloadable information. I had a few nuggets to share too - the other moms hadn't heard about the children's museum discount, for example (nor had the speaker!)

Then despite that lovely information-rich session, and having talked there about my whole MA/diapers/co-pay experience, I learned something new in the comments when I posted about diapers... Trish gave this excellent advice:

Just make sure the doctor checks "no generics" on the prescription or you will get the cheapest diapers known to man!!

Gah! Trish, the delivery service that our caseworker recommended only has "generics" available, so we're working with that at this point. But see, there we go again -- I didn't know what I didn't know and nobody told me up front!

I'm a librarian, so information is my stock in trade. I'm very good at ferreting things out when I've got a known question (and even at getting library users to clarify what question they're really digging for when they don't ask it very straightforwardly). But when I don't know what I don't know, and am not aware that there's even a question I should be asking, I'm as stuck as the next person.

Blogging is one answer, I suppose. Regular in-person support groups with other parents in a similar boat, where things can come up in discussion, is another. (That's one thing I don't have going right now, despite my otherwise-awesome local support network.)

How do my fellow special-needs parents out in bloggy-land cope with this?