During the holiday-preparation whirlwind earlier this month, I also had the chance to help out a couple of students doing end-of-semester projects relating to special needs. My niece interviewed me by e-mail with a series of questions about Joy's diagnosis and development and how our family manages. Between my answers and this blog, she wrote up a paper that earned her a 100% grade, highly satisfactory!
The other interview was by phone with one of the LEND trainees we mentored this fall, who had an occupational-therapy survey for me about OT goals and progress. There was one flavor of question that came up again and again, that I struggled with answering. The question had to do with satisfaction, on a scale of 1 to 10... how satisfied are you with the goal? How satisfied are you with your child's progress?
It's not easy to assign a meaningful number to a question about satisfaction! Thinking about it later, I realized that for every one of the progress-questions, I could have truthfully answered almost anything between 1 and 10 each time.
Of course I'm not satisfied! How can I be satisfied, when Joy is so clearly behind her peers in comparison, and likely always will be? We can't let ourselves be satisfied. We're always going to have to keep striving, pushing for the next step, giving it our all to achieve... first the possible, and then the impossible!
Of course I'm satisfied! Look how far this girl has come, look what wonderful progress she's made this past year! She's working with good people who are responsive to her needs and to our participation, and the forward movement is obvious. We've had extra affirmation of that in the visit we've got going on from GrandpaJ and GrandmaJoy right now, and what they observe in Joy just since their last visit in September!
Of course there must be a balance.
Satisfied can't mean "OK, we're done, no need to work any more." In our goals for Joy, our goals for ourselves, our goals for our state and country, quitting is not an option. We can't be stagnant-satisfied.
On the other hand, there is in our culture an almost pathological urge against satisfaction, against having enough and counting our blessings. We are bombarded with messages urging us to consume, to buy, to live better by acquiring more. The country is only now waking up to the pathology of the insatiability at the tippy-top of the income ladder, the barons whose individual wealth is greater than the GDP of entire countries, who are in the process of buying United States' political system. How many billions are enough, and at what cost to how many of the little people down at the bottom of the heap?
How can we learn to balance a truly grateful satisfaction with an appropriate moving-forward?
I'm reminded of the Jewish Passover song Dayenu, which tells of God's great gifts to the children of Israel: bringing the people out of slavery in Egypt, the miracles of being led and fed in the desert, the gifts of the Sabbath and the Torah. As each gift is listed, the chorus affirms "Dayenu" which translates as "it would have been enough for us" -- or, as in the version I first heard, "it would have satisfied us."
And yet, the scriptures tell us one story after another of the exodus in which the people were not satisfied and complained to Moses, complained to God. It would have been better if we had stayed in Egypt as slaves rather than come out here into the desert -- at least there we had enough to eat!
Satisfaction is a choice, an attitude, a commitment, whether we remind ourselves in song or otherwise.
I blogged about it only in passing, but last year instead of traditional New Year's resolutions, I chose three words to shape the year: active, tidy, relax. They rather morphed into "active, organize, relax" as events in Wisconsin exploded in February, and I never did manage the "relax" one very well. But active and organize took on new dimensions!
This year, I'm looking at these three:
balance
forward
kindness
Balance in the right kind of satisfaction; balance in schedule; balance in mindset.
Forward for Wisconsin; forward in goals for myself and goals for Joy; forward rather than stagnation.
Kindness in everything -- to myself, to those who disagree with me, to everyone I encounter.
What three words would make a satisfying 2012 for you?
Showing posts with label New Year. Show all posts
Showing posts with label New Year. Show all posts
Saturday, December 31, 2011
Saturday, January 1, 2011
New Year's Reflections: Identity
-- Cartoon from the New Yorker, July 1993
"Facebook makes cyberspace more like the real world: dull but civilized. The masked-ball period of the Internet is ending. Where people once led double lives, real and virtual, now they lead single ones again."
Time magazine, Dec. 15, 2010
-- "Person of the Year 2010: Mark Zuckerberg"
The turn of the year is a traditional opportunity for introspection, taking stock, looking back and looking forward. In this medium, I tend toward what I call "bloggy navel-gazing" -- reflections on what this Elvis Sightings enterprise means for me (and about me) as Joy's mother, JoyMama. Of course the blog is framed around Joy herself, but she's not the one with the words to speak for herself. Someday, someday! but till then, I'm afraid that most of what you're getting here is me.
The other evening JoyDad and I had a holiday date-night, dinner and a movie thanks to the babysitting team of Grandma Joy and GrandpaJ. Our movie of choice was The Social Network, a fictionalized account of the founding of the wildly-popular online social-network known as Facebook. Well-paced show, zingy dialog, compellingly plotted, the two hours flew by! The lead character, Mark Zuckerberg, co-founder and billionaire CEO of Facebook, was a geeky Harvard undergrad when he launched the first version of Facebook in 2003. While Facebook was a student-members-only operation for its first three years, in 2006 it expanded to anyone over the age of 13. Facebook now boasts over 500 million users worldwide, most of us under our "real names" -- because much of the point for Facebook users is that you want your friends and acquaintances to be able to find you.
The movie took as its frame the real-life legal battles over Facebook's origins, but played very fast-and-loose with Zuckerberg's character. To hear the movie tell it, the core motivation for the creation of Facebook had to do with Zuckerberg's inability to hold onto a certain girlfriend (or any other friends), as well as a desire to belong to Harvard's exclusive social circle. According to the Time article, however, Zuckerberg is still together with his Harvard girlfriend, and has devoted friends as well as a strong family, and founded Facebook because it was just such a cool thing to do!
The dance between real-name identity and pseudonymous identity has been of interest to me since I first started Elvis Sightings under the pseudonym JoyMama. At the time, I'd say that maybe half the autism-parent blogs I followed were under pseudonyms. About a year ago, there was even a cluster of three or so blogs that had started out with real-names and then made a retroactive switch to pseudonyms.
But lately it feels like there's a trend toward blogging under real-names. The new bloggers I've been adding to my list are predominantly real-name bloggers. I'm also one of very-very few contributors to The Thinking Person's Guide to Autism to contribute under a pseudonym.
I'm mostly happy with staying pseudonymous. For Joy's protection and my own, I don't want my real name to be too easy to connect to the blog, particularly since it's an unusual enough name that pretty much all the Google hits on it are really me -- and I've been leaving trace-able real-name trails online since about the time of that New Yorker cartoon. (Unlike a fellow I once met who shares a name with a world-famous Olympic athlete, who commented that he could post anything he wanted under his real name because it gets buried under famous search results!) But many of you knew my real name before you visited this blog, and I've shared it with others who have become bloggy friends.
Here's where I think the dance gets interesting. In general, I think that people tend to equate online anonymity with inauthenticity. After all, on the Internet nobody knows you're a dog! You can create any identity you want for yourself under a pseudonym -- or say awful things without having to own the consequences in real life, if so you choose.
On the other hand, face-to-face communication isn't free of identity-creation either. We make choices all the time about which of our thoughts we want to share, how we want to present ourselves, what face we want to show the world. And, as a recurring pseudonymous presence, JoyMama has to own what is said on Elvis Sightings and in comments on other blogs. I can't hit-and-run under my established pseudonym, not that I'd want to!
JoyMama is me. My reflections here have a great deal to do with my identity, even if they don't have my real name directly attached. In fact, readers can learn a lot more about the real me on this blog than through occasional casual face-to-face encounters -- or, for that matter, than by reading my real-name Facebook status updates. I wonder if that's maybe the best of both worlds: the protection (and fun!) of the masked-ball that the Internet can be, yet also the authenticity of a real-person identity, firmly attached to the pseudonym.
That identity is not a static entity. Joy is a work-in-progress, JoyMama is a work-in-progress, so are Rose and JoyDad... and all of you. I expect Joy and myself to be life-long learners, and I'm looking forward to blogging about what we learn in 2011.
If you'd like to get updates on our ongoing Elvis Sightings evolution via Facebook, you can click on the "Like" button in the right-hand sidebar. Be advised, though: it won't help you figure out my real name, but it will (probably) give me yours!
Happy New Year!
Wednesday, December 31, 2008
Auld Acquaintance, New Acquaintance
Happy last-few-hours-of-2008!
It's been almost exactly half a year since I asked "Is this thing on?" as I introduced Joy to the blogosphere in my very first Elvis Sightings post. Now here we are, six months and 100 posts later, with a conversation and a community well beyond what I had ever imagined. As I said at the time,
Well, the conversation has been more than OK. I owe a major debt to Maddy of Whitterer on Autism, for discovering Elvis Sightings and introducing me to her extensive readership. (Niksmom and Osh followed me over from there, I believe.) Bedtime ritual posts led me to jesswilson at diary of a mom, and Rhemashope at Autism in a Word, whose precious daughters have plenty in common with mine. A discussion of the Scottish poet Robert Burns (who introduced, if not actually penned, the Auld Acquaintance poem that we all mumble through on New Year's Eve) opened the doors to Therextras and a lively ongoing conversation with Barbara/BRatK. And then there's Mama Mara, always on the edge and also right around the corner. And many more, and I hope many more yet to come!
Then there are Joy's family members, both the commenters and the lurkers. And the wider lurking community from church and friends far and near and goodness knows who else. Thank you for keeping up with us, and all the prayers and well wishes. Your support means the world to us.
And then there are those who reach Elvis Sightings through search engines. Some find topical tidbits (linear nevus sebaceous syndrome, for example, or craniosacral therapy). Many others are in search of the other kind of Elvis sightings, or vampire encounters, or Santa Claus. Or "how bad is fizzy juice," or whether Handy Manny and Kelly really have something goin' on the side. Welcome all -- even if you don't find what you expected here, we'll raise a glass in your honor anyway. Elvis and Santa and yes, even Edward, can be real for you too, if you clap loudly enough or something...
You know, my mother and her mother both had/have two lovely traditions that I never did manage to latch onto for myself: personal journaling and regular family letters. Suddenly at the age of forty, by taking up Elvis Sightings, I've discovered a way to do aspects of both, with a lovely connected conversational twist. It's been a treat so far!
Finally, I must also acknowledge that I've actually only written, well, ninety-eight posts here. The other two are courtesy of my co-blogger, co-parent, partner in marriage and all sorts of other shenanigans, JoyDad himself.
So together we'll pour the fizzy juice not too long from now (it'll be midnight somewhere in the world, if not necessarily here) and raise a glass to auld acquaintance and new. Blessings to all in the new year, and we'll see you in the next 100 posts!
It's been almost exactly half a year since I asked "Is this thing on?" as I introduced Joy to the blogosphere in my very first Elvis Sightings post. Now here we are, six months and 100 posts later, with a conversation and a community well beyond what I had ever imagined. As I said at the time,
I'm writing mostly for myself, but also for family and friends already met, and also those not met yet. I hope there will be conversation, because I like conversation, but if not, that's OK too.
Well, the conversation has been more than OK. I owe a major debt to Maddy of Whitterer on Autism, for discovering Elvis Sightings and introducing me to her extensive readership. (Niksmom and Osh followed me over from there, I believe.) Bedtime ritual posts led me to jesswilson at diary of a mom, and Rhemashope at Autism in a Word, whose precious daughters have plenty in common with mine. A discussion of the Scottish poet Robert Burns (who introduced, if not actually penned, the Auld Acquaintance poem that we all mumble through on New Year's Eve) opened the doors to Therextras and a lively ongoing conversation with Barbara/BRatK. And then there's Mama Mara, always on the edge and also right around the corner. And many more, and I hope many more yet to come!
Then there are Joy's family members, both the commenters and the lurkers. And the wider lurking community from church and friends far and near and goodness knows who else. Thank you for keeping up with us, and all the prayers and well wishes. Your support means the world to us.
And then there are those who reach Elvis Sightings through search engines. Some find topical tidbits (linear nevus sebaceous syndrome, for example, or craniosacral therapy). Many others are in search of the other kind of Elvis sightings, or vampire encounters, or Santa Claus. Or "how bad is fizzy juice," or whether Handy Manny and Kelly really have something goin' on the side. Welcome all -- even if you don't find what you expected here, we'll raise a glass in your honor anyway. Elvis and Santa and yes, even Edward, can be real for you too, if you clap loudly enough or something...
You know, my mother and her mother both had/have two lovely traditions that I never did manage to latch onto for myself: personal journaling and regular family letters. Suddenly at the age of forty, by taking up Elvis Sightings, I've discovered a way to do aspects of both, with a lovely connected conversational twist. It's been a treat so far!
Finally, I must also acknowledge that I've actually only written, well, ninety-eight posts here. The other two are courtesy of my co-blogger, co-parent, partner in marriage and all sorts of other shenanigans, JoyDad himself.
So together we'll pour the fizzy juice not too long from now (it'll be midnight somewhere in the world, if not necessarily here) and raise a glass to auld acquaintance and new. Blessings to all in the new year, and we'll see you in the next 100 posts!
Tuesday, December 30, 2008
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.
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.
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