Similarities (Row, Row edition)

Three years ago, I wrote a post titled Similarities.  The post listed a whole string of commonalities with a sweet young lady in Massachusetts and her family, whom we've never met except in the blogosphere.  But I know of no other child who is more like Joy than Rhema.

In September 2009, the post was about their shared love of window dancing.

Yesterday, I got chills when I found the following clip on the Rhema-blog, Autism in a Word.




If you close your eyes and just listen -- might have to turn the volume up a little, it's a phone-video -- this could be me and Joy.  We do exactly the same thing with songs, where Joy fills in the blank.  Row, Row is one of our favorites.  Joy requests it by grabbing an adult's hands, swaying, and crooning "Whoa, whoa."

Even that might not have been enough to nudge me to write this post.  But then I opened Joy's backpack when she got home from school, and I found these.

"Row, Row" pictures

Joy's been hard at work in art class again.  Two weeks ago, she made her first Song Spots art, dotting with a Magic Marker in time to music.  Last week, she used a paintbrush and dotted in time to "C is for Cookie."

This week, she worked in two different media, paint and crayons, producing the artworks above.  She had a different aide for yesterday's class, who didn't know "C is for Cookie" (Joy's first request) but they quickly settled on a different song.  The artwork for October 5 is brought to you in time with Rhema's song:  Row, row, row your boat.

One year, some time, some how, these girls must meet.  And their mamas, and their sisters -- we could even bring the dads along, if everyone's in the same country at the same time!  I wonder if Rhema and Joy would recognize the kinship that's so spine-tinglingly evident to their blogging-mamas?

I think they might.  Especially if there are windows to dance in, and familiar songs with just the right blanks to fill in.

1 in 88, 1 in 252, 1 in a million

The new autism-prevalence estimate numbers are out from the Centers for Disease Control.

One in 88 is the new number. One in 54 among boys, one in 252 among girls.

For Joy, I'm also always aware that the autism diagnosis is on top of her linear nevus sebaceous syndrome, for which numbers are not collected and estimates are rough and wacky. My guess is that the combination makes her, yes, one in a million. At least.

Nobody really knows what the numbers mean (though opinions abound) -- how much of this increase heralds a new and dramatic change for who we are as human beings collectively, and how much involves increased recognition of who we've always been. And here we sit at the close of Developmental Disability Awareness Month (March) and the opening of Autism Awareness Month (April) and I find myself wondering together with Commissioner Sharon Lewis of the Administration on Developmental Disabilities:

At what point do we move from seeking simple awareness about intellectual and developmental disabilities to expecting meaningful respect for people with ID/DD?

Here is our beautiful one-in-a-million Joy:

The artwork above is courtesy of a drawing program on Joy's new iPad, whereby we can easily take photos and trace them via the touch screen. No, she didn't do this herself! Joy actually doesn't like the drawing program any more than she likes to draw on paper. But I think I'm going to need an entire post or more for the iPad, and this one isn't it. The rest of this one is actually about an outing last weekend to the local arboretum, on a one-in-a-million spring morning that came five or six weeks early for how Wisconsin usually operates. (Does this herald a new and dramatic change?)

The cherry blossoms were out in full magnificence:

Joy got to smell the blossoms with a bit of help from her sister:

You can see that we're going to be sun-screening the scalp again this summer. Yes, I did have to reprise the almost-buzz-cut routine again due to stimmy hair-pulling. On the bright side, now that we're on our third go-around with this, it's gotten a whole lot easier than the first time we experienced this.

But speaking of delightfully-stimmy things -- I think that Joy's favorite part of the trip was a bush whose excellent qualities could be experienced in any season:

I think there will be more arboretum trips in our future this summer. It's good cheap entertainment, seeing as how we weren't winners of $640 million... (Yes, JoyDad did go and drop $5 for the thrill of it all. Rose was fascinated -- she'd never seen a lottery ticket before!)

Keep calm, and carry on...

Sibling Stories

Joy's big sister Rose (in 3rd grade, age almost-nine) was assigned this past week to write a poem. Unprompted, she chose her sister Joy as the subject of the poem. She neither asked for nor received any suggestions other than confirming how to spell some of the longer words.

I wish I could blog the whole poem here, but I can't do that without blowing the pseudonyms. Joy's full real name is part of the poem, and I can't remove/replace it without making it something considerably other than what Rose wrote. But I can tell you that she described her sister using the words "intelligent" and "really impressive" and "magnificent."

I don't know if it's actual perception or wishful thinking, and I don't really care. It captures something of the eyes through which Rose views her sister -- eyes that simply shine with love.

I have to think of two sibling stories I've encountered recently, from generations not so long past, that started in circumstances very different from ours.

One story is a minor strand in the amazing book The Immortal Life of Henrietta Lacks, by science journalist Rebecca Skloot, which I read earlier this fall. (Here's a fine review of the book.) Henrietta Lacks was a young woman in Maryland whose cancer cells, taken without her knowledge or consent shortly before her death of the disease in 1951, led to a huge list of scientific advances and a multi-billion-dollar industry in cell culture -- at no financial benefit whatsoever to the Lacks family. One small part of the difficult history of the Lacks family: Henrietta's oldest daughter Elsie had epilepsy and substantial developmental delays, and was placed in a mental health institution, where she died two years after her mother's passing. Or perhaps I should say, an overcrowded hell-hole of an institution called the Hospital for the Negro Insane of Maryland, where she was almost surely subjected to brutal experiments -- a practice more common in those days than we'd like to think. Elsie's youngest sister Deborah had no idea about all of this (either her mother's story or her sister's) until Rebecca Skloot started unearthing the history, and then Deborah joined Rebecca on the quest to find out about her sister, and so much more. It was only this past May that Elsie Lacks' remains were relocated to the family plot and honored with a proper headstone -- little enough that anyone could do in her memory after all she most likely suffered.

Another is a story that the JoyFamily happened to catch just this past Sunday on CBS Sunday Morning. This one was the sibling-story of Jeff Daly, whose little sister Molly was sent away in 1957 to an institution (one that passed for "enlightened" at the time) due to her developmental disabilities. "Where's Molly?" he'd ask his parents, and they'd tell him "Molly's not here any more." Eventually he stopped asking, and the memories receded until his parents' deaths in 2004. He found Molly's Social Security card in his father's wallet, enabling him to begin a search for his sister -- who turned out to be still alive and residing in a nearby group home. They are now part of one another's lives once more, feeling very blessed to be able to be family again.

Rose was watching this with us, and struggled to take it in... that families used to be advised to send their Joy-children away and be told not to visit them, that everyone would be better off if you'd just forget about them. (Oh yes, she made the connection immediately). She couldn't imagine Joy living anywhere else, when Joy so very clearly belongs with us!

I found out even more of the story when I started poking around online -- there was a Reader's Digest article in March 2006 that gave some details that I'm glad Rose didn't hear. That Molly disappeared suddenly, when Jeff was six: one meal she was at the table, and the next she wasn't. That he used to get sent to his room for asking what happened to her. That their mother only ever visited Molly once and seemed to have been relieved to send her away because, as Jeff was told when he started interviewing relatives to make a movie of the story, "a disabled child wasn't right for her perfect life." That Jeff and his wife Cindy, even in the mid-2000s, had to fight to change laws that were preventing other families in their situation from finding relatives who had disappeared into institutions like Molly had.

I'm so grateful that we live when we do, and where we do. That the Joys of this country have a legal right to a public education. That we have not personally encountered a single soul, doctor or educator or family or acquaintance, who has suggested that Joy would really be better off living somewhere else without our interference (of course such attitudes do exist, it's not hard at all to find them online! but nobody in our immediate circle has even hinted at it. Which is good.)

We still have a long way to go. Warehousing happens. Abuse happens. Much is still wrong. But we've come so far, so very far! And sisters like Rose and the "really impressive" Joy, and their families and communities, are so very much the richer for it.

"Enjoyed Keyboard Play"

Sisters enjoying keyboard play -- now:





And then:



They've grown so much!

Sensory-Friendly Ramona

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

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

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

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

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

So, the movie. Ramona and Beezus.

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

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


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

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

Wordless Wednesday: Sisterly Edition

Similarities

One of the joys of being part of this bloggy enterprise is "meeting" people who share traits and experiences with Joy (and me), whether across town or on the other side of the country or world.

This was reinforced, in the case of one delightful similar-sister we've never met in person, by a comment on the last post -- and by the photos later in this post.

Sweet Rhema and Joy share so much...

Both carry names that reflect their families' faith-rootedness.

They're just about the same age.

They're both fast and strong (and at risk for flight, fences and tags notwithstanding.)

Both have an on-and-off relationship with spoken language -- generally more off than on.

They're both gymnasts, furniture and otherwise.

Both have epilepsy issues.

Both are Baby Einstein devotees.

Both give glorious butterfly-kisses.

Neither can be reliably left alone with an open cup.

Both are dearly beloved by their typically-developing sisters.

And they're both window-dancers.







Rhemashope, I'm so glad to know you and your darling window-dancer too! Hugs across the miles to our sisters.

AMAZING UPDATE:
Ohhhhh. Look at Rhema's latest window-dance, everyone. From yesterday. As in, within a day of Joy's window-dance photos. Separated at birth, or what?!

What About Me?

Per usual, my reading list has been heavy on the fiction lately, and all from the library. I don't hear the siren-song of autism-book addiction quite the way some of my blog-friends do! Every once in a while, though, I do get seduced into picking up an autism-related book. And then I learn interesting things. And then I have to do a book report, 'cause I report out on everything else autism-related around here...

Anyway. The recent read was What About Me? Growing Up with a Developmentally Disabled Sibling, by Bryna Siegel and Stuart Silverstein. Siegel is a developmental psychologist (and imaginary BFF of Mama Mara) who has written a number of books on autism; Silverstein is a pediatrician and the older brother of a sibling with autism. So even though it's not directly billed as being about sibs with autism, that seems to be the jumping-off point.

So I found myself first gulping and eventually chuckling my way through the second chapter, about the research on sibs of developmentally disabled kids. I had no idea that we (and Rose) were so much behind the 8-ball. Consider:

• Research suggests that having a handicapped sibling is consistently more difficult for older sisters (p.28)
  
• Overall, girls tend to be more often negatively affected than boys (p.29)
  
• Adjustment can be more difficult for same-sex sibs (p.30)
  
• Sibs closer in age to the disabled sib tend to experience more distress (p.30)
  
• It helps to have a larger family - more sibs to share the experience/load (p.31)

Add to that the research that families who planned their children carefully (me, plan? ME?) tend to feel a greater sense of unfairness when a child turns up with a disability, and that younger couples are often better able to cope than older couples (40-cough isn't OLD, is it?), and that authoritarian parents tend to have an easier time providing the sense of structure that a disabled child (especially with autism) may need... Well, we're just a mess waiting to happen, I guess. At least we're not single-parenting ("Without doubt, the most difficult situation to cope with is parenting a disabled child as a single parent") -- my hat is off to my blogfriends who ARE.

Except that, I actually think we're doing OK. So far anyway.

Rose seems like an exceptionally healthy kiddo.

I did pick up some interesting things to watch out for. The fundamental question, I think, is whether we're [un-necessarily] requiring things of Rose that we wouldn't require if Joy didn't have autism. We'll need to be careful about asking her to do too much Joy-care; right now it sometimes takes the form of "watch your sister for a minute while I go put the laundry in, OK?" Definitely something to keep to a minimum.

The other one I catch myself on is a little more insidious. It has to do with the fact that Joy is likely to do damage to Rose's stuff that gets left unattended in the open. So if Rose leaves a bunch of markers and her artwork all over the kitchen table and walks away, Joy is likely to grab the markers and crumple the paper. Should Rose have put the project away? Well, yeah. But most kids don't get such intense natural consequences for that kind of omission. We need to be sure we're sympathizing appropriately for all the wreckage, rather than solely reinforcing the lesson of, "Well, that's what happens when you leave your stuff where Joy can get it."

I also liked some of the general strategies that the book offered: Things like using humor to reframe sticky situations with Joy, giving Rose alone-time with parents, and being sure to give Rose her fair share of praise for accomplishments (seeing as how Joy gets such lavish praise for little things like putting on her own bib or saying even a single word).

The book also made an interesting comparison with the adult-children-of-alcoholics situation. The comparison has kind of an uncomfortable feeling about it, and as the authors point out, Twelve-Stepping obviously does not apply! but I did find myself nodding at a couple of the points. Both neurotypical sibs and COAs find themselves in situations of high responsibility, having to give up the right to be childlike at an early age, placing their own needs second, being unwilling to bring friends home to play, keeping a lot of bad feelings inside... very interesting.

Next up: Horizon (The Sharing Knife, Book 4) by Lois McMaster Bujold. Back to the fiction for me, friends!

Sisterly Generosity

Earlier this week Rose's school had one of those Scholastic Book Fair fundraiser things. I am a little ambivalent about how the kids come home with these carefully handwritten wish-lists that they've obviously done in class, but we've generally let Rose pick a book or two off her list to purchase, and chalked it up to community support.

The day of the book fair, Rose came charging home after school with a friend in tow. The friend had invited her to turn right around and go back to school with her mom for the book fair, and Rose really wanted to go NOW instead of have me take her later after Joy's therapy.

So I pulled out the lone twenty-dollar bill from my wallet, rehearsed with her which two books she wanted to buy, and got set to send her off.

And then she said, "Wait, I want to buy a board-book for Joy."

I didn't have any more money in the wallet, but before I could mention this, Rose had galloped off to her room and pulled out the box where she keeps her allowance. She counted out five dollars, which she was going to put in her bra-purse but I convinced her to take something that actually zipped up to keep the money safe!

Here's what she brought home for her sister:



Between the change from the twenty and her allowance money, she'd had exactly enough with just a couple of pennies to spare.

Joy likes her new gift very much. She's been carrying it around a lot, and this evening I had to make her hand it over so I could get her to the table for supper. She said something that JoyDad, the barista and I all agreed sounded very much like "book."

=================

P.S. Just so it doesn't sound like we've got Saint Rose here or something... you should have seen the power struggle we had over clothing yesterday. It was COLD yesterday morning, and Rose wanted to wear capris and sandals to school. I made her wear long pants and shoes, which wrecked piano practice and the rest of the morning's preparation. After warning her that I didn't want ANY complaints about cold on the way to school, I let her get away with wearing a light hoodie for a wrap. Sure enough, about 5 minutes into the walk, the lower lip sticks out:

I didn't knooooow it would be so cold! It's NOT MY FAULT!

Natural consequences are a real booger sometimes. Heh.

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.

Wordless Wednesday (photo time!)

How wonderful and pleasant it is
when brothers live together in harmony!

-- Psalm 133:1, New Living Translation

(Yes, and sisters too!)

Note for relatives, etc. who haven't encountered Wordless Wednesdays before: the theme of posting photos on Wednesday is a tradition that quite a few bloggers are using to give some structure to their week. Wordless Wednesdays run the gamut from captioned in the header, like this one from Opposite Kids, to extensively captioned, like this one from Therextras.