Tuesday, September 29, 2009

Linear Nevus Sebaceous Syndrome

There's a new information site and support group in town.

(Well, OK, in town virtually speaking.)

Linear nevus sebaceous syndrome is a rare neurocutaneous condition about which information has been awfully hard to find, and the lack of a dedicated support group has left folks (like Joy-parents) with no place to turn.

Behold, LNSS Connections.

And its corresponding LNSS-Connections Yahoo! Group.

Comments, suggestions, etc. welcome!

Monday, September 28, 2009

Elvis Has Left the Campfire

When last I wrote, the Joy-family was off to a weekend's worth of activities, to include a camping adventure with our congregation at a nearby state park. Last year we had a fine success with this annual tent-camping event, Joy's first overnight campout beyond our yard. We did another successful backyard campout on Labor Day weekend, but ended up deciding not to take the tent out this Saturday. JoyDad was feeling under the weather, and for a while I thought I might be taking the girls for the evening on my own.

Fortunately, though, he perked up enough to make the trek to the campground after Joy's afternoon therapy, so the whole family could take part in picnic potluck and campfire conviviality.

Joy sat well at the unfamiliar picnic table and ate, per usual, a wider variety of goodies than her sister did. For entertainment afterward, she found a plastic band from a firewood bundle that she held onto almost all evening, a fine distraction from the fall leaves on the ground that might otherwise have consumed her attention (and that she might have attempted to consume herself in greater numbers than she did!) I spent a nice chunk of time blowing bubbles for her as the dusk was falling, and then when it got too dark to see bubbles, we moved over to the campfire.

Our congregation is big on singing, with four-part a cappella hymns a regular feature of our worship. This translates to lots of lovely harmony on the folksongs around the campfire as well. JoyDad always brings along his guitar to these events; sometimes one or two other people will bring guitars as well, but this year there were three other guitars, two banjos, a ukelele, and a bunch of copies of the folk-song compilation Rise Up Singing.

So at one point between songs, JoyDad inserts a query as to whether there's anything by Elvis in that thar songbook. And our local Elvis impersonator (what, doesn't every congregation have a local Elvis impersonator?) asks JoyDad does he know the opening lick to "Suspicious Minds." And JoyDad, who knows that song forward & backward, swings into the opening bars without a pause. Someone shines a flashlight-spot on our Elvis dude, and we get the entire song, all the moves and facial expressions and rich Elvis voice -- the whole deal. Yours truly, with Joy on my lap, was able to chime in with some of the other gals on the back-up vocals... it was quite the highlight of the evening. Elvis sighting at the campfire, who knew?!

Thank-you. Thank-you-very-much.

Saturday, September 26, 2009

Our Choice of Frame

Another seminar-Friday has gone by for the LEND program, so of course my brain is full once more.

One of yesterday's seminar topics involved delivering developmental screening results to parents, when the screen had turned up some areas of concern that needed a more thorough assessment.

The angle that was echoing in my mind:
What if that screen were an autism screen, and the family's image of autism had been informed by THIS:

This celebrity-directed video (Alfonso CuarĂ³n, of Harry Potter and the Prisoner of Azkaban fame) was released by Autism Speaks on September 22, in an attempt to raise autism awareness. As Autism Speaks co-founder Suzanne Wright put it, "We will all help shine a bright spotlight on autism."

I find nothing bright about this video. It portrays autism, as exemplified in images of people (mostly children) with autism, as a relentless monster that will inevitably destroy the lives of the families of those in its clutches, unless those families devote every waking moment to its defeat.

A sample from the transcript:
I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late...

I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain...

I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.

The second half of the video portrays families surrounding their children and vowing to defeat autism, for example, "We will spend every waking hour trying to weaken you."

I know that this reflects the feelings of a sizeable group of parents.

Let me say very clearly (in case you don't already know something of us and our experiences with Joy):

We do not live in this fearful, desperate frame. And we do not believe that this is all there is to look forward to!

Joy's challenges are substantial enough that we could have chosen a path of fear and anger and blame. She does not speak. She is not toilet-trained, and would play with her feces if we did not keep her wearing onesies. She does a lot of protesting these days, and grabbing, and throwing. She needs a constant watchful eye.


Our marriage is strong. We have the money we need, though we have never been wealthy and times are of course tight. We generally get the sleep we need too. We laugh much, much more than we cry. Joy goes to daycare, to church, to the zoo, to restaurants, camping, swimming, and much much more.

And meanwhile, she is learning, growing, smiling, kissing, and enriching our lives so very, very much.

We enable this richness through our choice of frame, our choice of how we will view Joy and her uniqueness and her strengths as well as her challenges.

How much harder it would be to make the positive choice if all we heard were the messages of the tenor of the "I Am Autism" video!

One of the suggestions that was conveyed during the seminar presentation, for all the future leaders in developmental disabiities who were present, was this (not an exact quote but the basic idea):

Remind parents, whether you're delivering a concerning screening result or talking about an actual diagnosis, that their child is still the same person that he or she was yesterday. All the things you love about your child, everything that was wonderful about your child yesterday, is still true today.

I'll leave you with a link to a different recently-published resource, this one from the Natural Supports Project that I blogged about earlier.

It's a booklet published at the beginning of 2009, called The CORE of a Good Life: Guided Conversations with Parents on Raising Young Children with Disabilities. The link goes to a page about natural supports in early childhood, where you can find a futher link to the actual 62-page PDF document (which is over 33Mb in size, just so ya know). It's aimed at both providers and parents, to guide conversations that explore what is important to families around ordinary experiences and relationships, beyond therapy and treatments. The approach is designed across developmental disabilities.

CORE stands for:
- Community connections and participation
- Opportunities to explore and pursue our interests
- Reciprocity in our relationships
- Enjoyment in our lives
Here's how the guide starts:
We begin here, in the early years, to empower parents to create a vision for their child's life and explore opportunities in the community that begin to build that vision.

The strategy is called Guided Conversations, described in the book thusly:
Guided Conversations are an invitation to think about;
- How to talk about children and influence how others perceive them;
- How parents identify the ordinary experiences of being a family; and
- How parents sort through the relationships that may be available to them and their child that they have not yet considered.

How to talk about our children and influence how others perceive them.

I submit that the proper use of the Autism Speaks video is as Exhibit A about how NOT to talk about our children. 'Nuff said. Let's move forward.

And the next move in this household is that we have to make a grocery list so we can take our daughters shopping, and then if the weather holds, get ourselves organized for the church campout tonight. Yes, that would include Joy. Of course.

Monday, September 21, 2009

Much Has Changed

Think for a moment about what it's like when you move to a new neighborhood.

When you move in, you're the new ones on the block. As far as you know at the moment, everyone else has been there... forever.

Then of course as you get acquainted, you discover that the retired couple over here have been in their house 40 years, this family over there came ten years ago, that house over there has turned over three times in six years, etc. It was fun for us to eventually learn that our home is built on land that used to be an orchard!

I've been feeling a little bit that way about coming into the disabilities-support system. For anyone coming in new, Birth-to-Three is simply there, free appropriate public education is a right not an innovation, etc.

But, as Barbara wrote in the comments on my last post,
We are less than a generation away from closeting children who were recognized early as different to an attitude where the threshold of good parenting is activism.

It was almost as if she'd been in the LEND seminar presentation this past Friday...

We had three speakers. The first, a social worker, has a younger brother with Down Syndrome born in 1959. The second, a nurse, is guardian to a man with multiple disabilities who is (I think) about my age. The third, a family support staffer, has a daughter with Down Syndrome born in 1988.

When the social worker's brother was born, the latest child in a large Chicago family, moms stayed in the hospital for a week or more after the birth. This mom came home as usual a week later, but the baby didn't -- they were keeping him to "help" mom accept the "inevitable" outcome that baby would be institutionalized his whole life. Mom & Dad eventually said NO and brought him home, and later went on to help found the Mongoloid Development Council, which eventually became the National Association for Down Syndrome. Public school education was almost unthinkable; his good fortune was in his parents, and that the recently-elected President Kennedy had some energy and vision around disabilities on account of his sister Rosemary. He eventually got his education at a new Kennedy school in Chicago, though it did mean living away from home.

The nurse entered the life of the man to whom she serves as guardian when he was 22. For much of the first half of his life he lived in an institution, and in foster care. He did not overlap much with P.L. 94-142, the legislation that first mandated public education for people with disabilities (regulations went on the books in 1977, to be implemented by 1980); however, he did catch the wave of the Medicaid waivers that allowed for long-term care supports in the community, such that though he needs round-the-clock care, he lives in an attractive house next to a park, together with three other men who need a similar level of assistance. He has an impressive array of supports, from job coach to transportation to the continuous onsite care.

The family-support staffer gave birth to her daughter in 1988, the middle child of 3, who was diagnosed with Down Syndrome within a day. Within weeks, they had Early Intervention on their doorstep! That early-childhood support was invaluable, and public education was available as well; however, it was assumed that she would go to a separate school. There was a procedure in place, though seldom used, to get a child "mainstreamed" in the regular school: you had to get the teacher to agree, and that's what they set out to do. The woman who agreed to be this girl's kindergarten teacher had such a wonderful experience with her that she moved up to teaching first grade the next year to accompany her student, and then went back for more schooling to become a special educator! The young lady graduated from high school at 21, and has a job at a local brew-pub. However, she still lives at home, though she would surely be capable of living in the community with the right supports; as she transitioned into adult services in 2007, she got a letter informing the family that the waiting list for "residential placement" was ten years. (Gulp.)

Lots of change. Lots of activism, parental and otherwise.

Lots of work yet to do.

Saturday, September 19, 2009

Beyond Compare

We've had a couple of neat things with Joy lately.

We've been hearing a lot of "uh-oh" again. Last night I was up for a while during the wee small hours, and heard Joy speak a big loud "UH-OH" from her bed, followed by a manic giggle. And then silence...

There are a lot more attempts and variations with the "more" sign recently. One particularly charming variation is to grab the hands of whatever adult is torturing is working with her at the moment, and bring that person's hands together to make the sign.

Joy loves to stim on hair-combs, and now that she's got enough hair to actually comb again, we've been trying to get her to actually use the comb a little bit. And, wonder of wonders, she's actually occasionally bringing the comb to her head and swiping a bit, with encouragement!

Joy is five years and four months old.


Joy's seven-year-old sister Rose was saying "uh-oh" at 8 months.

She was starting to use the "more" sign at 10 months.

And there was a startling moment at 10 months where I, on a whim and not having tried to teach her at all, handed Rose a hairbrush and asked her, "What do we do with this?" She responded by bringing it to her hair. I was amazed at how she'd simply picked that up... amazed at the course of human development... amazed that I'd not had to explicitly teach her at all.

Such a different trajectory. It's almost like there's no comparison.


As if it's helpful to compare. I don't do it all that often. We haven't been forced into it lately by any of those assessments that slap a time frame ("operating at the level of an X-month-old") onto Joy's achievements, or lack thereof.

I try to blog "in the moment." If I'd cut off this post before the "she's five years and four months old" line, it would fit that framework nicely.

I'm learning about developmental screening tools now, though. And getting a bit of review of "typical" development. And how our kids get put into the boxes that get them the help they need, by getting compared against the norm as best the experts know it.

Also, it's not fair to Rose to try to forget about her achievements and how we rejoiced in all the things she could do, so early, so very early on.

It's a balancing act, spinning plates aside.

How does one get to "beyond compare"?

Thursday, September 17, 2009

Apple Picking

It was a cool summer, with the chilliest July on record according to this morning's paper! But now that fall is imminent, we've had a long string of dry sunny days with highs in the upper 70s and mid 80s.

Perfect for an apple-picking trip this past weekend! As if we didn't have apples coming out our ears from our own trees earlier this summer. But there's something special about an apple orchard, at a gorgeous farm where they even have an old-fashioned tire-swing for the kiddies...

Look at that sky.

It's good to get out and about as a family!

P.S. My better half is celebrating his umpty-umpth birthday today. Happy birthday, dear JoyDad!

Monday, September 14, 2009

Another Arena for Inclusion

Today's slice of my parent-trainee experience has to do with the social work class that is part of the LEND trainee requirements in our program: Social Work 644, Issues in Developmental Disabilities.

It's a distance-training course, that was originally conceived with the lectures broadcast on public television. Now the lectures and course outline have migrated to the web, where they are freely available (for sure until February 2010 at least, at which point funding issues may become a problem). Let me give you that web site again, http://www.iidd.wisc.edu/. Quickest way to the lectures is the three links at the top of the page, Module A, Module B, Module C. Of course to get credit for the class (academic credit or CEU) you have to register & pay, which gets you access to the readings & assignments & exams. OK, that's my public-service announcement for the day!

If you actually "take" the class, there's a pre-requisite document that is so important it's attached as an appendix to the syllabus. Here's what the syllabus says:
Throughout your writing in this course, you will be expected to write using Person-First Language. A required reading, "But I Don't Have a Disability!": Writing Inclusive Documents is offered in week 1... Person-First Language is expected in student exams and discussion postings and points will be deducted for inappropriate use of language.

Elvis Sightings readers who hang out in disability-awareness circles will have encountered this issue already and formed their own opinions, which I'd love to hear in the comments! Person-first language is not new to me either, and it's how I blog. But my family and "meat-space" friends might appreciate a closer look at the principles, and the controversy (the latter of which I've not really yet seen addressed related to the course.)

The idea of respectful and person-first language in writing about people with disabilities is about a whole lot more than "political correctness." It's about changing attitudes, challenging stereotypes, breaking down barriers, treating people like people instead of some kind of marginalized other. In a word, it's about: inclusion.

Here are some examples from the Inclusive Documents paper:
  • Instead of the disabled, the crippled, the handicapped, a cripple or invalid use persons or people with disabilities; disabled persons or people so that you will put people first and avoid generalizing people as if they belonged to a disability community.

  • Instead of confined, bound, restricted to or dependent on a wheelchair use wheelchair user or person who uses a wheelchair so that you will emphasize abilities, not limitations.

  • Instead of epileptic use person who has epilepsy or seizures so that you will put the person first.

  • Instead of normal (when used as the opposite of disabled), whole, able-bodied use nondisabled so that you will use a neutral, appropriate term instead of implying that someone with a disability is abnormal.

The document also makes points about how not to frame an anecdote or story:
  • Don’t focus on the disability unless it is crucial to a story. Avoid tear-jerking human interest stories about incurable diseases, congenital impairments or severe injury.

  • Don’t portray successful people with disabilities as heroes because of, or in spite of, their disabilities. Similarly, don’t sensationalize disability or use emotional descriptors such as unfortunate, pitiful, and so forth. Avoid “tragic but brave” stereotypes.

I'll highlight one further "don't" from the list: Avoid euphemisms such as challenged, physically inconvenienced, handi-capable, mentally different -- disability groups consider these terms condescending because they reinforce the idea that disabilities cannot be dealt with directly and candidly.

So, that's what our leadership group, and anyone else taking this class, and many others I'm sure, are being taught. And for the most part, it's all material that's already comfortable to me, and I'd encourage others to work on. Personally, I have not chosen to refer to Joy as autistic, or epileptic for that matter (she's so much more than either of those terms!)

Interestingly, the document avoids "going there" with autism. Doesn't use it as an example at all, even though the rest of the course clearly situates autism among the "developmental disabilities" next to epilepsy and cerebral palsy and others. I suspect it might be because the autism self-advocacy community has some substantial dissent when it comes to person-first language. One of the most powerful and succinct arguments for why not to use person-first language in the case of autism comes from Jim Sinclair, in his 1999 piece Why I Dislike "Person First Language". Here are some snippets of his three points:
I am not a "person with autism." I am an autistic person. Why does this distinction matter to me?

1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case....

2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part. Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness"...

3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person.... I am autistic because I accept and value myself the way I am.

The piece is not long, and is well worth taking the couple of minutes to read in full.

However -- my sense is that there is at least some disagreement in the autism self-advocacy community about this. Some prefer the term "autist" rather than "autistic person," some are fine with person-first language.

Personally, I am happy to refer to someone as "autistic" if they want to be referred to in that way. I feel kind of the same way about racial/ethnic labels: Do you as an individual prefer me to say Hispanic, or Latino, or refer to your country of origin? I'll do my darndest to keep your personal preference in mind, and also not bring it up if I wouldn't feel the need to specify white / Anglo / Caucasian. And when I'm talking about more than one person or don't know what an individual prefers, well, I just have to try to go with what currently seems to be one accepted term or another, and figure that a good-faith effort is fine.

With Joy, I have no idea what she's going to prefer. I've got to believe that she'll be able to tell me someday.

Friday, September 11, 2009

9/11/2008 - 9/11/2009 and beyond

It's been an entire year...

since we last witnessed a Joy-seizure.

Break out the fizzy juice!

Wednesday, September 9, 2009

Kisses in High Places

Joy was delightfully kiss-y this evening!

She'd run up, grin & giggle right into my face, and then pull my head down till our lips were touching.

As JoyDad and I watched President Obama's speech before Congress this evening, she was bouncing all around the living room with kissies and smiles.

At one point during the speech, the mood in the congressional chamber grew pensive as the president honored the late, great Senator Edward Kennedy.

Could it possibly have been coincidence, that JUST as the president mentioned Senator Kennedy's across-the-aisle collaboration with Senator Chuck Grassley regarding Medicaid for children with disabilities...

Joy approached the TV screen, and put her smiling face right up to his. Just at that moment.

You've been kissed by an angel, Mr. President.

Monday, September 7, 2009

The World Has a Lot to Learn

So the semester is now underway, Leadership Trainee-hood and all.

My plan is to blog at least once a week on something I've encountered in my MCH-LEND studies. I figure this will be good for a couple of things -- it will help me distill my thoughts, and will (ideally) let my readers in on some of the benefits of the program.

So this week's installment has to do with a brown-bag I attended and a video that JoyDad & I watched.

The brown-bag was a report on the Natural Supports Project, an initiative aimed at finding ways for young people -- middle & high school-age -- "to participate more fully and naturally in school, work, and community activities." While they commented that people who hear "natural supports" tend to think of wooden beams or cotton underwear (!), what the project means by natural supports is people. As in, the people who are around you already, who are naturally a part of your life (i.e. not hired to be there).

The project offered mini-grants throughout the state to schools who created groups where young people, both with disabilities and without, focused on sharing activities and making space for real relationships to blossom. There are some lovely video clips on the site showing some of the results. I think for me the most powerful moment of the brownbag was when one of the presenters was describing the focus groups that the project staff held afterwards, interviewing participants about what worked and what didn't. When participants were asked about what were the barriers to making these groups work well, NOT ONE of them said, "Well, it would have worked if Sally/Sammy weren't so darn limited." Nobody blamed the disabilities, or the kids who had them! Wow.

Well, I had met both of the presenters prior to the brownbag, and so I went up to talk to them afterwards, and ended up going home with an additional resource that they had plugged during the presentation -- a one-hour documentary on DVD called Including Samuel, by photojournalist Dan Habib. Habib has two sons, a typically-developing pre-teen and a elementary-schooler with cerebral palsy. His family's journey so far, and their commitment to include their son in all aspects of life as fully as possible, twines together in the film with the stories of four other families, plus teachers and principals and disability rights activists. Not everybody in the film has had good inclusion experiences in school-based settings -- "Inclusion is an easy thing to do poorly," one school administrator points out -- but the central message is that full inclusion is something that we, as a society, need to learn to do right.

I found myself writing down quote after quote from the video. Here are a few of them:

  • "Constantly worrying about Samuel's future isn't the best way to be his parents." (Samuel's mom) -- I hadn't thought about it like that before, but she's right. So many worries, but when they get too dominant, that's no way to make a life.

  • "I can't limit him. Everybody else in life is going to limit him. I can't do that." (Mother of another featured child in the video, a young lad with autism)

  • "All kids -- with the right supports, the right teaching methods, the right technology, can learn the general education curriculum." (This one was either from a teacher or an administrator.) I'm still chewing on the implications of this. A beautiful and radical statement. I want it to be true.

  • "If we want something smooth and easy, then we're in the wrong business." (A principal)

  • "The baby boomers aging, they ain't gonna call it disability, they gonna call it 'old,' but they a$$es gonna need a ramp!" (Disability activist Keith Jones, on assistive technology)

  • "Is there any place in society where inclusion already exists, full-blown? and the answer is yes. It exists within a lot of families." (A principal)

  • "He will teach a lot of people. Which is good, because the world has a lot to learn." (Dan Habib, Samuel's father)

There's a local screening of the show coming up soon, with a chance to meet the filmmaker, but JoyDad's got a gig that night. I highly recommend it to my classmates, though! For those not around here, I bet you can get it on Netflix, or check the list of PBS broadcasts -- it might be on TV in your market this fall.

Update 9/11: So this afternoon I came home to a phone message from the school district on my answering machine -- plugging the local showing of Including Samuel & meet-the-filmmaker later this month! This was a blast phone message that went out to all the school families, something that I generally associate with very important happenings like registration in August. Wowza!

Update 9/12: From the comments: Barbara just alerted me to another post on Including Samuel. If you'd be willing to host a viewing party of the film for 10 or more attendees, bop on over by Ellen and her blog To the Max before September 20 and leave a comment about inclusion for a chance to win the DVD plus party-hosting materials! Or just go peruse the post & comments -- lots of perspectives and food for thought.

Friday, September 4, 2009


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.

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?!

Tuesday, September 1, 2009

Initiative and Planning.

Going to the park with Joy is a mixed bag these days. On the one hand, she's mighty stimmy on the gravel or woodchips or whatever. Handfuls go flying into the air at random times (one of those less-than-a-good-example kinds of things when other kids are around), or into the mouth. Bleah.

On the other hand, she is doing great things on the play structures. The other day I had her at the school playground, on equipment that had three different kinds of ladders (petal-grid, spiral, ordinary). It was such a treat to watch her think and plan as she made her way up the petal-grid and the spiral! The wheels were turning and she was making the most of it.

Then she saw the big-kid swings, way down the hill and across the grass.

WHOOSH. She was on her way.

Headed down to the big kid swings
When I caught up with her, she was trying to get into a swing. These are higher up than our usual park, though, and she couldn't quite make it. So she came over to me, grabbed my hands, put them under her arms. Pick me up, Mama. Put me in the swing. I was so happy to help!

Riding in the swing
Joy has done so well lately staying in the swing and holding on for high pushes, and not trying to get off until the swing is nearly stopped. So I gave her the big-kid treatment, with the great big running-underneath pushes (do you call those underducks? or underdogs?) Anyway. She grinned so big I thought her face was gonna split in two.

Meanwhile, Rose was clamoring for the big pushes too. I think they picked swings at the opposite end of the set on purpose to give Mama a workout...

Joy's use of the hand-pulling request has blossomed lately. To the buckles on her booster chair (unbuckle me, Mama, I want to get down!) To the TV/video-player (Baby Einstein, please, Mama!) To the door handle (play outside? Now?) To her own underarms (I'm tired of walking, pick me up!)

The flip side here is that when I have to refuse (sorry sweetie, we can't start a video, the therapist is coming in five minutes!) she is declaring her unhappiness in no uncertain terms. The fuss can persist long after the initial offense. I should be celebrating this, I guess, right? As in, it's not normal for a kid to give up so quickly and nonchalantly as she's generally done in the past. Oh bliss, oh Joy, she's discovered her inner two year old! Hurray, and a big deep sigh.

One final vignette for this post.

Yesterday afternoon Joy was hanging out in the living room, watching a video (yes, Baby Einstein, what else?) and I was lounging on the couch with a book. Suddenly she went over to the quilt that stays in the room, that her baristas use for blanket-pulls and swinging and such. Her 6-ft-7 barista-dude has been trying to teach her to help spread the quilt out a little bit -- he's the only one that can give her the full swinging treatment all by himself! Well, she took the quilt and made spreading motions and got it laid out a little bit on the floor. Then she came over, took my hand, pulled me from the couch. And then she sat down on that blanket.

Look Mama, I've done the planning & prep work. Swing me now!!

I called JoyDad over, and together we swung her high, to the accompaniment of that dazzling grin.