It Hurts Me Too

When things go wrong,
go wrong with you
it hurts me too.
-- Tampa Red, and many other blues artists since

For many years, Joy's been slow to show us if she's feeling pain. I wrote about it at the end of 2008 in terms of high pain-tolerance. She used to pick up a whole handful of splinters without batting an eye, and back in '08 would let me dig them back out with minimal reaction. (By the time of the "handful of splinters" post in 2010, she was starting to object to such operations somewhat, though still not reacting obviously when the splinters went in.)

Things are changing on the pain-reactions front, though. Now when Joy gets a splinter, she grabs for me to show me right away. She cries more readily at pain, does a much better job of indicating where the "owie" is, and wants an adult to rub it / kiss it / make it better.

There's been a change in how Joy reacts to Rose's pain, as well.

Time was, Rose would burst out into tears, and Joy would have "inappropriate" reactions that would be difficult to process with everyone involved. Joy might try to swat Rose, or burst out laughing, neither of which were reactions that felt particularly supportive to her sister!

But earlier this week, we had three occasions in short succession on which Rose began to weep, and Joy responded by crying real tears as well.

Rachel Cohen-Rottenburg has been doing some wonderful work about empathy, founding the site Autism and Empathy and fighting the good fight against those who maintain that a lack of empathy is inherently a part of autism. I haven't been able to give the site the attention it deserves, nor the level of thoughtful comment, but I've been following along as I can. And I had to think of Rachel's work in context of what I'm seeing in these interactions between Rose and Joy.

"It hurts me too."

The sad occasion this week which caused Rose to weep so frequently was the passing of our bunny Ellie. Ellie has been our final remaining house-bunny since the death of her partner Phoebert a year ago January. Ellie was only a year or two younger than Phoebert, definitely an elderly bunny, and we had decided against getting her a new companion because we were ready to try a pet-free home. (Claiming back the space, the time spent on weekly box-and-enclosure cleaning, the food-and-litter expenses, etc.)

We actually thought we were going to lose Ellie 6 weeks ago, when she stopped eating her bunny-chow... but she was still willing to eat greens, and so we went with a hospice-style approach where we gave her all the greens she liked as long as it made her happy in her final days... and she perked back up! But she was definitely in decline, and things went so fast this past Sunday it became clear that this was really it. So Ellie and I made one final trip to the vet on Monday.

Rose & Joy both got to pet Ellie's remains. We had a burial in the back yard.

I'm less worried this time around about what Joy does or doesn't understand. She probably "gets" quite a lot more than we're tempted to think she does. I've been more concerned about Rose, who has been reading The Giver by Lois Lowry in school -- it's a dystopian novel about a would-be perfect society, in which one of the mechanisms for keeping things perfect is "releasing" imperfect infants and the infirm elderly by means of lethal injection. I was steeling myself for the conversation that connected Ellie's final injection to The Giver, and maybe even to Joy?! But I don't think the connection was made... which is something of a relief. Rose is growing up fast, but maybe it doesn't need to be that fast.

JoyDad and I have had rabbits in our home since 1994. Ellie's departure is the end of an era.

Good-bye, Ellie-bun. We miss you.

Ellie
2000(?)-2011

Pacing the Crazy (legs)

The other week I mentioned (in passing) that I was training for an 8k race, the Crazylegs Classic. Which took place this morning.

In the spirit of the Many post, perhaps I should have mentioned that between the run and the walk versions of the event, there were almost 20,000 participants registered. And I went alone, though I was technically part of a team from the university library system. One consequence of Joy's full therapy schedule is that I generally can't bring family along to cheer when I race, so this was a solo event in a sea of many.

To get that many runners onto a course, you can't start everybody all at once. The top-flight runners get to start first, and then everyone else gets assigned to a different clump of runners depending on your pace. I was in the 36th wave out of 44, which meant that since they were trying to start one wave per minute, my wave started over ten minutes after the race had already been won.

But the neatest thing happened as I lined up with my fellow potential-slow-pokes. I ended up standing next to another mom, just about my age, who was running her first 8k race. And she just happened to have a little daughter with special needs. Like epilepsy. And a tendency to slip away and escape. And communication issues. And a high pain tolerance.

We chattered non-stop while we moved slowly up to the starting line. And then we ran together and kept each other going, surely faster than either of us would have been alone. We had each (optimistically) guessed that we'd make an 11-minute-mile pace, which is what got us assigned to the same wave. I ended up being just a little slower in the last half-mile where she was able to pull ahead -- but she was waiting for me at the finish line. We'd both run the entire way.

My pace per mile was 10:20. Woo hooooo!

I hadn't thought that blogging about an 8k race would be about special-needs mamas helping one another out. But there you have it.

Feelin' No Pain

Pain is an interesting sensation. Nobody likes it -- most of us medicate or meditate it away when we can -- but it serves a mightily important function.

Without it, we might not know that something is wrong.

Joy's pain responses are... unusual, to say the least. I've mentioned it a couple of times on the blog, like when she was going through the phase of biting herself. It's not that she doesn't feel pain at all -- she yelps when she gets her shots, or when she runs into something hard, or when she gave herself a big chomp. But it's generally an itty-bitty fuss. Things that would send Rose into an hour-long, drama-queen tailspin, Joy stops reacting to in seconds.

There are definite advantages to this! It means that I can operate on splinters (and she got a lot of 'em this summer) with scarcely a yell or thrash. It means that she can take a fall and jump right back up with no down-time for fuss-and-comfort.

This past week or so, the pain thing has come to my attention again. Joy got an infection around the nail of one of her big toes, possibly an ingrown toenail kind of thing. I've had those before, and was a total wuss about it. Noticed it every step I took, moaned and whined and complained.

Joy jumped on hers. Repeatedly, joyfully. Without a flinch.

The only signs I had that it was bothering her at all were a day of picking at her big toenails (and that was equal-opportunity, she played with both feet), and that she didn't really want me to spend too much time examining the owie-foot. Which was clever of her, because I did end up poking at it on two different occasions to let the corruption out. Not that she fussed about having it lanced, mind you!

I was on the edge of taking her to the doctor about it. It's just hard to know when you don't have the usual cues. If the red had spread any further, I would have called the clinic. But it turned back around, and is healing up nicely now.

See, there's the scary thing. It's hard to know, when you don't have the usual cues. I've missed splinters on her before, until they got red and angry enough to catch my attention. And when the pain reactions are unusual and the words are few, how does one evaluate potential ear infections? Toothache? Tummy trouble? Hairline fractures?

I've heard it dissed as a myth that people with autism don't feel pain. Certainly I can see the potential for damage and abuse, if that's used as an excuse to ignore people's needs, either physical or emotional.

On the other hand, here we are with our n of 1. And by my best observation, Joy's pain tolerance is incredible.

I can at least hope that, on balance, her unique relationship with pain will be a blessing for her.

I'd wish for my faithful readers that you'll be feelin' no pain as 2008 rolls into 2009, but that might be taken as a license to... overindulge... and I wouldn't be a party to that sort of behavior!! We'll be rockin' the fizzy juice in our household, I can tell you right now.

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.