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!]
Tuesday, September 30, 2008
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?
========
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.
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!
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.
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.
But we didn't do this to her. I promise. She's doing this to herself. With her teeth.
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.
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.
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...
dangit...
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!
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!
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!
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!
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!
See her garden and harvest and process and freeze and pickle and can, and toss this plate back and forth to JoyDad as well!
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!
See her at church, getting there almost every Sunday, occasionally even leading Sunday school or preaching!
Then on her chin...
See her in her professional life, working half-time as an academic librarian!
Then on her forehead...
See her with her extended family and friends, in person and online, e-mailing and visiting and phoning and blogging!
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!
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...
dangit...
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!
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