Thanksgivings

I know several people who are posting daily "thanksgivings" throughout November, either on Facebook or on their blogs.  I didn't take up that challenge, mostly because committing myself to one more daily obligation, no matter how soul-nourishing, would have been -- well, committing myself to one more daily obligation.

But I do believe I could have blogged a Joy-Thanksgiving pretty much every day of the month.  It has been an incredible November!

Here a just a few of the Joy-Thanksgiving events of November.  Milestones, not just inchstones!

Joy's participation in her school music class annual program was more robust than it's ever been.  Her music teacher burned a CD of the songs in the program to send home, and we loaded them up on Joy's iPad so she could listen to them at will.  This year's show was in honor of Veterans' Day, so we had patriotic music mixed in with Joy's usual Baby Einstein soundtrack.  Her favorites among the program were This Land is Your Land (mama approves, even if they didn't include the populist-protest verses!) and a little marching ditty called I am Proud to be an American (not the Lee Greenwood "God Bless the USA" song, thank goodness.)  On concert day, Joy's class was stationed at one end of the risers, so Joy could stand or sit with her staff members next to her class.  She marched in place a little bit in the right place, and waved a little flag, and made it through the whole show.  Proud, proud mama!

Some days later, when GrampaK came over for lunch one Saturday, I was telling him all about the concert and Joy's participation.  Joy was on the couch with her iPad -- and as I told Grampa about the songs on the iPad, all of a sudden the iPad started singing I am Proud to be an American.  Which means that Joy not only followed our conversation and acted upon it, but she also must have gone deliberately to the music-program song list rather than playing Baby Einstein.  Oh.  My.

Then there's this e-mail message to share from one of Joy's school staff the week after the music program, which sent me over the moon for the rest of the workday:

Just have to share my goosebumps delight from the first ten minutes of [Joy] and my day.  Tons of language in context.  No cue prompts.  We sailed thru our multiple tasks and I can't stop smiling.  Wish u had been here to share

That day, something came home that made me smile even wider:  Joy's first homework.  Oh, we've had schoolwork tasks come home before, but they were always framed in terms of showing us what Joy's working on in school, rather than actually being called HOMEWORK.  I was surprised how deeply this affected me -- all it entailed was a square 4x4 grid, on which Joy was to place smaller paper squares, using the terms "take" and "put."  But the importance of it was driven home a week later, when I was asked by another kiddo on the schoolyard, "Does Joy ever have homework?" and I was honestly able to say, "Yes.  Yes, she does."

In the wake of all that, you might guess how much smiling went on during Joy's parent-teacher conference mid-month!  I was surprised to see Joy's team so well represented, having only been sure that the teacher and case-manager would be there, but her student-teacher/SEA and her speech therapist and her occupational therapist were all there too.  So much good news to share, together with ideas for how to tweak things even better!

The best piece of news from that conference, as far as I was concerned, was the piece of construction-paper artwork above Joy's locker.  It turned out that they'd had a class project making construction-paper clouds with rainbow bands dangling below, where each cloud had the student's name and each rainbow band carried an adjective describing the students.  Most students came up with their own, but since that's not Joy's scene just yet, the teacher invited the students to help come up with a rainbow of adjectives for Joy.  She said they were just tumbling over one another with suggestions, and the themes were all directly from the kids.  Here's what they came up with:


Sensitive
Outdoorsy
Technical (they refined this one from "computer-y" in admiration for her iPad mad-skillz!)
Swift
Beautiful
Musical


Even after just a couple of months, my daughter's classmates know her really well, don't they?  Because that rainbow there is an awesome representation.

The LEND trainee who came along to observe the conference was deeply impressed, and we had a fine conversation afterward about the importance of inclusion even when a student isn't in the classroom.  (There's a whole 'nother blogpost in there, my friends!)

But wait, there's more.

This past week, Joy was invited to not just one but TWO birthday parties, together with her sister.  On back-to-back days, yet!  The first party was for a neighbor and the venue was a bounce-house facility.  How perfect is that?  Joy bounced and bounced, and repeatedly tossed a bouncy-basketball up through a basketball net (from the bottom up, rather than making a basket, but who's counting?)  Then after an hour and a half of bouncing and sliding, the kids all herded into a room with tables for cake and ice-cream and present-opening.  And Joy sat down between two kids she didn't know, with Rose a little way down on the other side of the table.  Once we got her served with goodies and lemonade, I went over to the edge of the room and sat on the benches with the other parents.  And stayed there, while Joy competently ate by herself and drank her drink and hung out uncomplainingly!

While I sat, a gregarious dad with a German accent served me cake, and then asked me if that blonde girl in the green shirt was my daughter.  "Yes," I said, preparing for the usual autism-solidarity conversation: is she on the spectrum, I have a close relative who is, etc.  "She looks so much like my niece!" was what I heard instead.  "I did a double-take, she could almost be her twin!"  JUST LIKE ANY OTHER KID.  No disability-related content to the conversation AT ALL.  I can hardly remember the last time I had a conversation with a stranger about my daughter that went that way.

And then we had another party the next night, for a classmate of Joy's, who also has an older sister who's a friend of Rose.  This one was at a gymnastics-sort of facility, with crash pads and climbing ropes and play structures and swingsets and free arcade games like air hockey and basketball.

Joy shot hoops with glee, over and over.  Look at her go!

Among the guests were classmates both past and present, who are happy to interact with Joy but also to give her the space she needs.  Then crowning delight came when we learned that the birthday girl's mom had assembled a special goody-bag just for Joy, full of stimmy-delights instead of the pencils and Blow-Pops that interest her so little.

Daily Thankgivings are hardly enough.  We are grateful beyond words to see our daughters grow and mature and move forward.

May your own celebrations of gratitude be plentiful and delightful!

You Can't Judge a Book By Its Cover

The unprepossessing back of a turtle escaping through a mud puddle

The spectacular undercarriage of that same turtle

Rose and I have read two excellent young-adult novels in recent weeks: Out of My Mind by Sharon Draper, and Wonder by R.J. Palacio.  (Some parts she read for herself, but mostly we did them as read-alouds). Both books feature 5th-grade student characters, a girl named Melody in Out of My Mind and a boy named Auggie in Wonder.  Rose will be a 5th-grader herself this fall!  Each 5th-grade protagonist has a strong family with two parents and a sister.  Each is intellectually ahead of the pack when it comes to their school peers.

And each has physical differences that shape how they interact with the world, and how the world reacts to them.

Out of My Mind was recommended to me via Partners in Policymaking.  Melody, who narrates in first person throughout the novel, has cerebral palsy.  She has a photographic memory, she's addicted to words, she can control an electric wheelchair, she can point and tap with her thumbs, but she can't walk or talk or feed herself -- so the world sees only the disability, and only Melody has access to the rich inner life of her own mind.  At least at first... When you put an electronic communication device at the disposal of a girl who knows how to read, you can expect that some amazing things will happen!

Melody's school experience, though, is just ugly.  She's been shunted off to a segregated "special-needs" room since she started school, and only in fifth grade is the school beginning to experiment with "inclusion" classes, where everyone (students and teachers both) completely underestimates Melody and her "special needs" classmates.

One aspect of Out of My Mind that hit me particularly hard was Melody as Cassandra-prophetess, when she sees something that's about to happen or in progress of happening that she needs to warn someone about -- and nobody can understand her or even get that they're supposed to be listening.

The story also brought back strong memories of my experiences on high-school quiz team.  (No further details about the novel forthcoming here; you'll have to read it to find out how this fits.)  My junior year, I was the only girl and the only junior on our high school's state championship Hi-Q team, a high-profile televised experience.  Our come-from-behind win in the last two minutes of the championship round was about the most exciting bit of my entire high school career.  It was fascinating to look back at my own experiences through the lens of Melody's adventures.

Rose was interested in Melody, and made a few tentative connections to Joy and her iPad.  But it was Auggie's story in Wonder that really grabbed her.  August Pullman gets to start prep school in grade 5 after a childhood of homeschooling through facial surgeries and medical fragility.  A stew of genetic irregularities has left him with a face to which people react with disgust and ridicule.  It makes for a challenging 5th grade year.  Fortunately Auggie, like Melody, is clever and has a strong sense of humor.

I think Rose was particularly captivated by Auggie's story for several reasons.  One, the author (a first-time novelist!) really captured the rhythm of middle-school dialog.  It sounded like people Rose knows.  She also appreciated the current pop-culture references (Diary of a Wimpy Kid!  Justin Bieber!)  She also liked that Wonder wasn't solely narrated by Auggie -- you also got to hear parts of the story told by other kids from Auggie's school, plus his big sister and a couple of her friends.  Oh yes, Auggie has a big sister!  So Rose got to hear big-sis Olivia describe the family as a solar-system where her brother is the sun and the rest of the family orbits him and his needs.  (To what extent is that us?)  She got to hear Olivia talk genetics and how she carries a gene for part of Auggie's condition that might affect her own child-bearing decisions... a new idea for Rose, and something we could assure her was not part of her situation.  But there were some genetic-science words introduced that have relevance to our story too, like "mosaicism."

I liked that neither story set up their 5th-grade protagonists as saints.  For the most part, they resisted the temptation to make everything too OK at the end.  And they both did a great job of weaving the end of the story with threads that had been introduced at the beginning.

I had to wonder, though -- I don't think that it's a coincidence that both characters were written to have above-average intelligence and were able to outshine their typical peers.  Melody could demonstrate (given the right technology) that she didn't belong in the "retard room" as her typically-developing classmates cruelly called it.  Auggie's academic performance could withstand the scrutiny of mean-spirited parents who didn't think a kid with a face like his could possibly be worthy of their precious (and deliberately non-inclusion) prep school.

Anyone got any good recommendations for novels with protagonists whose disabilities affect their intellect?

Meanwhile, on the drive home from the annual Memorial Day sojourn in the Upper Peninsula (whence cometh the turtle pics), Rose started to write a story based on herself and Joy, inspired by Wonder and Out of My Mind.  Maybe I'll be recommending her opus to you one of these days.

Not So Lucky As All That

Last November I wrote a post with the title Lucky, wherein Rose and I discussed how much things had changed from when I was in elementary school and kids with disabilities didn't get educated in the same schools as their typically-developing peers, if they got to go to school at all.

Her priceless summation of the situation:

It's so lucky for Joy's class that they get to know her and have her in school with them!

Those words are haunting me just now, as we're thinking ahead to next year with IEP-ing and with filling out questionnaires that will inform how next year's classes get assembled.

You see, although students with disabilities at Rose & Joy's elementary school are educated in classrooms with typically-developing classmates, it's not spread out evenly across the school. The school practices "clustering," whereby the kids with IEPs all get assigned into just one or two classrooms per grade, so that the special-ed staff can focus there and collaborate with just one or two regular-ed teachers. (A similar thing happens with students for whom English is a second language).

What ends up happening is that the ratio of disability to non-disability in the cluster-classes gets pretty far out of whack in comparison to the real world. Any behavior issues associated with the disabilites end up concentrated too -- and multiplying upon one another. And it can leave some folks thinking that students with and without disabilities really shouldn't mix, because look at all the problems that arise!!

It also means that Rose is not so lucky as all that.

Like her mother 40 years before... Rose has never been in a homeroom class with a student who has a significant developmental disability.

Just now, that feels incredibly unlucky to me.

Lucky

My older daughter Rose and I watched the movie Temple Grandin, starring Claire Danes as Temple, on DVD the other night.

Temple Grandin may be the best-known person with autism in the world. She's a professor of animal science, a wildly-successful designer of livestock handling equipment, and also an author & lecturer on autism. I had the privilege of hearing her speak in the spring of 2010 at the Autism Society of Wisconsin annual conference. (And I got to meet her and get her autograph!)

Rose was fascinated. Very impressed to see Temple's signature on my copy of The Way I See It, inscribed "To [JoyMama]." Amazed at how Claire Danes, whom she'd seen as Beth in the movie Little Women, could become this completely different person. (Temple was amazed too -- as she said at the conference talk, "Claire Danes became me in a way that was really weird!")

Joy wandered in and out of the room as we watched, but Rose was engaged with the movie all the way.

She wondered whether Joy sees the world in any of the picture-flashes that portrayed Temple's thinking, or the superimposed architectural designs.

In the scene where Temple's mother is told of the autism diagnosis and advised to put her daughter in an institution, Rose asked questions and then made the connection with the Where's Molly? story we saw on TV a year ago.

She was distressed by the way Temple's classmates treated her, and shared that she'd seen kids make fun of Joy at school a couple of times. But she allowed as how she gets teased from time to time herself. I pointed out that when Temple was in school, and even when I was in school, kids with developmental disabilities simply didn't get to go to the same schools that typically-developing kids attended, if they even got to go to school at all.

Rose thought about that. "It's so lucky..." she said...
and I expected her to go on to say how lucky Joy is that she gets to go to school with everyone else...

"...for Joy's class that they get to know her and have her in school with them!"

The Fruits of Inclusion

"Is that your daughter?" asked the girl in the swing next to Joy's. She and her friend, about Rose's age both, had been looking over at Joy, trying to figure out what was up.

"Yes, she is," I said from my seat on a nearby low wall, where I was watching Joy lean from the swing and revel in the gravel and shredded tires, all full of happy-noise.

"She's pretty!" was the next offering.

"Thank you," I responded, with some surprise. "Her name is Joy."

"Hi, Joy!"

I'd hoped Joy might reply, since she's done well with greetings recently, but she was too wrapped up in the delights of gravel.

"What is she saying?"

"Right now, I think she's saying how much she likes what she's doing..."

"Does she say any words?"

"Sometimes, but sometimes not."

Then the other girl spoke up, somewhat hesitantly.

"Does she have a... disorder?"

Deep breath. "Yes, she does have disabilities. Do you have any friends with disabilities in your class at school?"

Both girls nodded vigorously. "Yes, we do. But we treat them just like normal."

And the next bit of conversation was just like normal -- and then they said, "Bye, Joy" and ran off.

And as they left, Joy said "buh-bye" with a little wave.

Two Good Days

Friday was a good day.

JoyDad and I both had the day off. Unpaid, since it was a required furlough day for me and he took a "moveable" furlough day. But still, a day off for the both of us, with both kids in school.

Several hours into our spring-cleaning & online activism, we got some lovely news.

The so-called "budget repair" law, passed in an undemocratic sneak-attack the previous week, had been put on hold by a Dane County judge!

Judge MaryAnn Sumi of the Dane County court agreed with Dane County District Attorney Ismael Ozanne that the apparent violation of Wisconsin's open meetings law was sufficiently serious to warrant a temporary restraining order, preventing the law from going into effect until the court can hold a full hearing the week of March 28. (The law was scheduled to be published March 25, to take effect March 26).

JoyDad and I decided to go downtown and celebrate. After all, if the law were to delay our paycheck-whacks even one week, that's over $100 we'd have available again to pump back into the local economy!

So we went to the Capitol around noon. I carried a sign that thanked the judge on one side, and on the other said "Rule Against the Bill!" Got lots of thumbs-up and car honks. (In Madison these days, you don't just lay on the horn to support the protesters. Instead, you tap the horn to the cadence of the chant: "This is what democracy looks like!") We walked through the Capitol, and then joined a group singing protest songs at the top of State Street for a while.

Then we walked down State Street and found a restaurant with supportive signs in the windows, and had a lovely lunch. We made sure to tell them exactly why we felt able to do so, and why we chose them in particular.

And the sun was shining, and our crocuses were blooming in the flowerbed, and we felt some of the first real hope we've felt in an entire month of unrelenting bad news. Not that this is over, by any means. The majority party will appeal every step of the way, probably up to the Wisconsin Supreme Court if it gets that far. (Vote JoAnne Kloppenburg for Wisconsin Supreme Court Justice April 5!) They can even take up the bill again from scratch, give appropriate notice, and presumably pass it again. But the public outcry would be immense, it would be an admission that they didn't do it right the first time, and the protest movement would only gain new steam.

And then! I took Joy to her swimming lesson after school, which is just about her favorite part of the week. I got to see her hoist herself out of the pool on her own, at the place where the water was too deep to get a boost from the bottom. I got to see her propel herself from one platform to another one five feet away, all under her own steam. I got to see her blow bubbles in the water (in between drinking it.) And I didn't even have to do a big clean up in the locker room of the generally-inevitable laxative effects of water-play -- she waited till later that evening!!

Saturday, too, was a good day.

Joy and I attended a birthday party for one of her classmates in the afternoon, an invite-the-whole-class affair. It was held at the apartment-dwelling of the birthday girl, probably about 10 kids in a small space with hard surfaces. The noise was pretty intense.

Joy, however, hung in remarkably well. We had a good 20 minutes before she began a big protest, and then we were able to go into the hall and walk the stairs and laundry-room for a while and calm down enough for a second try. I had provided ribbons for her own use, so the wrapped packages wouldn't be too much a temptation.

Since it was all classmates, they are well-acquainted with spending time with her and were very sweet. The birthday girl made sure that Joy got a turn with the blindfold from the pin-the-tail game -- we turned it into a peek-a-boo game, and then Joy did manage to take a turn sticking a tail onto the donkey (after everyone else was done, and without blindfold or spin.) At a later point I asked another little girl if Joy could play with some discarded paper from an unwrapped present. Not only did she bring that paper over, a minute later she came around again bearing a curly ribbon for Joy's use!

We made it through over an hour in total, long enough to enjoy some cake. Joy wasn't the only kid who cried during that time, and none of the other crying was caused by her. And as we left, there was another kid who was also overwhelmed by the noise -- the hostess was just calling his mom to come pick him up.

SO included. It felt great.

One more "good" to share.

Rose and JoyDad got to take a turn at the Capitol while Joy & I were at the party, but I got my turn in the evening. I joined an interfaith vigil that meets every night now for an hour at the Capitol, 7-8pm.

We weren't a big group, and we weren't allowed to light our candles -- a couple of law-enforcement fellows very nicely told us that they had their orders regarding the defacing qualities of dripping wax. (One of our number spoke up, "That's OK, these guys are public workers, they're on our side!" and got some discreet grins and nods from the cops.)

We held signs, and sang. Last night's organizers had also printed out brightly-colored slips of paper with relevant quotes from various scriptures and philosophers and other leaders and thinkers. We took turns reading quotes and then taped them into a collage. I also took some chalk and put one of the quotes onto the pavement:
"There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest." — Elie Wiesel

Among our number were two boys on the autism spectrum. One of them played a hand drum enthusiastically as we sang. He wrote his own message in chalk to the Governor on the Capitol's very front step after the vigil, just as I was leaving. I believe the message was taking a turn for the rude... but y'know, this young man has the right. He's among the ones who stand to lose the most.

Two very good days.

Every Child Will Participate

We're all swatting at the same mosquitoes
Eating burned-up burgers
At the picnic of the world.
-- Tom Chapin, "Picnic of the World," to the tune of the CanCan

It was an ambitious project. I first heard about it at a PTO meeting last November -- Joy & Rose's school had won a grant to host a dance residency in January. For three intense weeks, a university dance professor and one of her doctoral students would swoop into the physical education classes, teaching grade-appropriate dance curriculum while choreographing (with major student input) an hour-long all-school performance.

"Every child will participate," said the principal.

I raised my eyebrows. Even the non-verbal second-grader with CP who relies on staff to wheel her chair around? Even Joy, who follows very few directives and has trouble with noises and large groups of people?

Come January, though, Joy's staff was ready and willing. PhyEd is one of Joy's best bets as far as being in class with her peers, and her gym teacher and special educator collaborated with me on how best to make the experience successful for Joy, and the initial dance-class sessions went reasonably well. We hammered out a plan whereby Joy would participate in only the first of two evening performances, with her trusty special educator at her side the whole time. We cancelled Joy's therapy for the evening of the performance, re-scheduled Rose's piano lesson, and went second-hand-store scrounging for the right color of shirt for each of them to wear. Brown for Joy, yellow for Rose.

The first hint of trouble came from Rose. She wasn't enthusiastic about the dance residency from the beginning, and ramped up the complaints as the performance neared. It's too chaotic -- this isn't coming together -- we don't know what we're doing -- everyone is SCREAMING in the gym, it gives me a headache!

Uh-oh.

Then on the day of the performance, the whole school had dress-rehearsal all afternoon, first class-by-class, then as an all-school group. When I came to pick up the girls at the end fo the day, one mama (who had come to see the rehearsal) told me that Joy had danced and done just fine. But then out came the special educator with a teary-eyed Joy, and gently told me -- the performance might not be such a good idea. As long as Joy was sitting on her lap in the noisy chaotic rehearsal, it was at least manageable. But when she and her group were "on," Joy had been frustrated, tearful, lashing out. Her special educator had had quite a dance herself, trying to guide Joy through the motions while anticipating and blocking all the other-directed acts-of-ow. It wasn't fun for anyone, just an unfortunate spectacle. (That last was my summing of the situation, not her words!)

One on level it felt like the first days of kindergarten all over again. All that prepping, all those plans, lost in a whirl of tears and frustrated injurious outburst.

On the other hand, I've had some practice now in adjusting expectations on the fly. Plus Joy's special educator was great. She was willing to hold and sing to Joy through the whole performance if we wanted, or to care for her in another room while we watched Rose perform. We decided, though, that Joy would be happier at home, and did a parental tag-team instead: JoyDad went to the first iteration of the show that evening, I went to the second.

It was entirely the right decision.

The gym was way overcrowded, and noisy, and hot. This stood in contrast to the outdoor temperatures which were plunging toward zero and beyond! By the second performance, the one I saw, even some of the NT kids were tired and teary. SO not Joy's scene.

The show came together really well, though! They were working on the school's motto, the theme of "Growing Strong." Then they divided it into four things you need to grow strong: sleep (kindergarten), shelter (first-graders), food (2nd/3rd graders), and clean air (4th/5th graders). Then each division had a wide latitude for interpretation. Joy's class, for example, had learned about Great Horned Owls -- sleep, night, owls... toldja it was widely interpretive! -- and moving with bodies held tightly and loosely. Best moment: watching the kindergarteners pounce and consume their prey, and then mimic regurgitation!

Rose's class, on the theme of food, went with a Picnic of the World dance. Their movement goals included African dance forms and cross-rhythms, which brought in the international component. Then for the picnic/food component, they split into small groups, each of which designed its own dance moves incorporating a picnic blanket.

Rose's complaints about the dance residency vanished for the performance. And I realized I didn't have much to complain about either. Joy had gotten the benefit of the instructional part of the residency, really quite a neat experience in itself, and Rose got to perform (which she loves to do, even if she couldn't articulate one single thing she'd learned from the dance residency.) Each child participated on her own terms, and at the end of the day, I guess that's really what it's all about.

We're all knowing at the deep-down heart of it,
We're all a part of it,
The picnic of the, picnic of the, picnic of the world!

Included: Gifts in Her Name, Words in Her Mouth

This Christmas Joy and Rose both brought gifts home from school for their parents. Rose's gift to JoyDad was especially fine -- a calendar with the following image:


"Hot peppers are red
Your guitar is blue
You are my dad
And I love you."
As far as gifts from Joy went, it felt like something of a new era. There was a little "I (heart) Mom" pillow for JoyMama, a calendar for JoyDad (what are they trying to tell him?), and a lovely pair of red beeswax candles for both of us that we've been lighting for a festive touch at meals.



It felt really sweet to get gifts from Joy. I was happy to see the inclusion aspect of it too -- this was something the rest of her classmates were doing, something the teacher had thoughtfully organized and parent volunteers had facilitated. I witnessed some of the other kids taking their turn to make candles and saw as how it was mostly grown-ups doing the work, though I think the kids were proud of "their" candles.

I do wonder to what extent Joy had any idea what was going on. She may or may not have been able to have any hand at all in the making of them.

I have some similar wonderings about another procedure that's a regular part of Joy's school day. It's the routine during circle-time at the beginning of the morning where the kids take turns standing up and sharing their news since last they met. Joy participates in this via a GoTalk 4, on which we can record spoken messages that play back when she pushes a picture-button. The standard picture for "news" is a star. (The other button you see on the image is how she says "yes please" or "no thank you" to hot-lunch for that day.)


As with the gifts, this is a routine with a very sweet feel to it. Every morning, I come up with something for her to share. Monday it was "My Grandma and Grandpa came to visit from Kansas." Tuesday we had "I sat on my new rocking chair." I always try to make it something relatively normal-sounding, that the other kids can relate to. After all, this is one of the few consistent times of the day they'll be in one another's company! Rose provides the voice, and does a fantastic job. Joy's teacher and I are both charmed at the way Joy "speaks" in her sister's voice.

The benefits of this are many. Joy gets to take part in a classroom routine. Rose gets to help her sister. Classmates get a little window into Joy's world.

And yet, we're putting words into Joy's mouth every day with this routine, words she did not choose. Words that she can't (yet) choose. Is this befitting the dignity of a six-year-old human being, who does after all have her own thoughts and feelings and opinions? Is it that much different than if one used the GoTalk to make your favorite dolly "talk" by hand-over-hand causing dolly to push that button?

I'm not entirely sure. At this point, I feel we can justify it from a "fake it till you make it" perspective -- one day Joy will learn to share her own news, while dolly never would! -- in addition to all the other positives I pointed out.

As with everything we do in service of inclusion, we'll have to keep re-evaluating as we go.

Product Hits & Misses: "Just Like the Other Kids" Edition

In general, as a parent, I tend to look askance at the argument "But Mo-o-o-o-m! All the other kids have one!" My poor, deprived children have neither Nintendo DS nor Playstation nor X-Box nor even Wii. Rose will tell you that on such scores, particularly with the expensive stuff, Mama has a cold Grinchy heart.

And yet. As with so many things, Joy leads me to new perspectives. For Joy, the opportunities to be like other kids are fewer and farther between than for her sister. I find myself actively seeking out opportunities to emphasize the "just like the other kids" aspects of her life. In some cases, like the two below, that includes products -- products that don't break the bank, even!

When we sent Joy off to school this fall, eating and drinking were a special consideration. I can pretty easily send a bag lunch that will keep her well-nourished. Drink, however, was a bit of a question. Joy doesn't "do" milk or juiceboxes these days. Fortunately she still likes water (and soda, though we don't send that to school!) She gets an open cup with supervision at meals at home, and was still using sippy-ish cups at daycare.

But Mama can't send a toddler-ish sippy to kindergarten with her big girl! So I went looking for a spillproof cup that:

• fits in a lunch box
  
• holds a decent-size drink of water
  
• doesn't leak
  
• is easy to open and close
  
• is easy to drink from
  
• is not particularly susceptible to chewing damage (no soft-straws)
  
• has gradeschool appeal

I found it at Target, at the appealing price of $3.99!


Target's Embark water bottle is BPA free, comes in bright colors (but without commercial character images), and has held up for a number of months so far. Joy has a pink one, Rose has a purple one, both are happy with them. We know of at least one friend whose mom got her one too after seeing my girls using theirs at the park after school! The only downside of these I can see is that they're in-stores only. Which is where Santa went to buy some stocking stuffers lately -- it will be good for each girl to have a back-up bottle...

Well, we got the original bottles back in the summer when the weather was still hot and the hydration need was more evident. But now we've got 10 inches of snow on the ground and temperatures in the deep freeze. Growing girls need winter gear, and that includes snow boots. Fortunately Joy does not have any particular foot issues / need for orthotics or any such. What I do require in Joy-boots is rugged construction and ease in getting the things on and off. What we've used over the past several years for both Rose and Joy, just like many of their classmates use, is the Snow Flurry boot from Land's End:


The big draw of these boots ($29.50, and you can order them online) is the velcro side-closures. You can't entirely tell from the picture, but each of the sides pulls open into a big wide gusset that makes lots of room for a little foot to go in, and then clings tightly closed to keep the boot on.

They've been improving these boots since we first tried them a few years ago. My only complaint with last year's pairs was that they got pretty stinky after a long season. This year's version claims "Antimicrobial finish helps fight odor" so we'll see if it helps! They've also made last year's little pull-tabs at the top of the closure into actual loops that a little finger can fit through to pull.

Joy's got the purple ones, and a couple of days ago as we were walking home we fell in with one of her classmates, a little guy who always greets her with a "hi, Joy!" even though he usually doesn't pay much attention to her other than that. This time, however, he noticed and took care to point out that Joy had the exact same boots as his younger sister -- and the same style as his own. Just like the other kids.... ahhhhh.

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I've been lax about "disclaimer-ing" these product posts, but I do want to make clear -- I receive no compensation nor consideration from the companies whose products I write about. If I ever get a review sample of anything, I will disclose that fact and would point out both positive and negative features forthrightly.

Included: Rewards at School

At the beginning of the school year, before the craptacular spectacular transition issues, we'd discussed with Joy's teacher his system for rewarding good behavior. Each child has a star-chart, and during the course of the day he publicly awards stars when he "catches" a child behaving well. The charts live in the children's lockers, and when they fill a chart, they get to go "shopping" at the special reward-shelves for a book to take home.

We'd originally contributed some board books (more expensive than the usual paperback rewards) for Joy to take part in the system. But then with Joy not in the classroom much at all, and having the reward so far removed from the good behavior, on top of the rough way she treats books... she ended up getting more immediate small rewards instead, and just not participating in the classroom's system for the first weeks.

Until I was volunteering in the classroom one Monday. One dear little girl went out of her way to tell me that Joy was doing well (bless her heart!) But a young fellow at the same table wanted to make sure that the record was set straight -- or maybe he just liked "telling"? Anyway, he swiftly pointed out that maybe it wasn't so great after all, because Joy never got to go book-shopping.

So I took this perspective to Joy's team -- that, even if the reward system is not perfectly set up to be meaningful to Joy, the other kids are noticing and her participation (or lack thereof) has meaning to her classmates. They immediately agreed to make a change. Now Joy gets stars like the other kids, no matter what level of meaning they may or may not have for her. And if she's not in the room much that day, her aides make a point of coming to the teacher and announcing audibly that Joy should get stars for thus-and-such she's done OUT of the room.

The first full star-chart that came home with a board book brought tears to my eyes. Her teacher had signed it with the message, "I'm so proud of you!"

Included: Walking Home to a Playdate

Joy had a classmate over for a playdate last week after school. This classmate's older sib had been a kindergarten classmate of Rose's three years ago and they're still close, so it was a double-decker playdate of younger girls and older. This was the first time in several years that the younger sib had come over to really spend significant time with Joy.

We started the playdate with all of us walking home from school together, about a 15 minute affair. On my way to school, I had grabbed a couple of little twigs of pine needles for Joy as I often do, because it's a favorite stimmy of hers. This time, as Joy's classmate came running over to us instead of heading for the bus, I realized that the pine twigs could be a great tool to invite her into a bit of Joy's world for the walk home.


So I gave one twig to Joy (who grabbed it with gusto per usual) and one to her friend. I explained to the friend that Joy loves to play with pine needles, and had her try the things that Joy likes to do -- tickle herself with the soft needles, twiddle them in her fingers, crush the needles a little bit and take a sniff of the piney aroma.

Both girls carried their pine twigs the whole walk home.

Included: J-Cat's Birthday Party

In Joy's life lately, there have been lots of neat little examples and efforts toward inclusion -- thinking about ways to integrate her life and her experiences into the lives of those around her. I was contemplating a great big long post about it, but it grew too huge. So I'm going to post a bunch of examples, in bits and pieces. That way your eyes don't cross while reading, and I get a whole bunch of posts out of it instead of just one! (Ulterior motive thus confessed.)

First up -- a birthday party last month. We are so happy when Joy gets invited to birthday parties! This one was a family party, celebrating the birthday of her young suitor and playdate friend, otherwise known as J-Cat.

The hand-designed thank-you card from J-Cat to Joy

A number of things went into making this party successful for Joy. First off, it was a family party, so there were parents floating around along with kids of various ages, meaning that not all the kids had to be involved in any one activity all at once. Then there was a meal that Joy appreciated heartily -- pizza, grapes, baby carrots, and birthday cake! all things that she loves to eat.

Most importantly, J-Cat's mom had Joy-proofed the living room area and filled it with things she's liked on our playdates: an exercise ball to bounce on, scarves and ribbons and noisy toys. Other kids could come join her there, and some did for little stretches -- Rose helped take the lead with that -- but Joy could also happily play alone while adults talked nearby. She also went outside to swing on their swingset, while other kids ran around with their games.

Birthday cheer to J-Cat, and thanks to his mama! We sure enjoyed the party.

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.

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.

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.

Home, Selectively-Restrictive Home

When Joy had just turned three, we paid a six-month follow-up visit to the pediatric developmentalist / autism-expert who had diagnosed her. We were struggling with some behavior and safety issues at the time. Joy was getting taller, able to reach things on counters and climb onto tables, and she liked the commotion of the results when she managed to shatter a glass or plate.

The expert advised us crisply that we had to strip down our environment. Plastic plates and glasses for EVERYBODY, she said. Pack anything breakable into storage. Consider folding chairs that you can fold up after meals so there won't BE any way to climb on the table. Creating a safe household for Joy comes first.

We were stunned.

We were also... non-compliant. (Heh. We're also not seeing this expert any more.)

Oh, we made a few changes. But they were changes that suited our family. Instead of folding chairs, we just made sure to do a better job of pushing chairs in to the table to make them less appealing for climbing. Instead of ditching our glassware and ceramics altogether, we did a better job of gating the kitchen and putting the breakables away.

I realized at the time that the developmentalist was recommending a chainsaw for a job that kitchen shears could do just as well. What I didn't put together till later was that her recommended changes flew in the face of a very important principle.

Least Restrictive Environment.

Readers who have, or work with, special needs kids in the public education system are nodding their heads in recognition just about now.

The Individuals with Disabilities Education Act (IDEA) includes two fundamental requirements: a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). It also ensures that each child will be served a bowl of acronym soup daily... OK, not really. What the LRE amounts to in the school setting is that you don't shut away or segregate off our kids unless there's a REALLY compelling reason to do so. The presumption is that children with special needs are to be educated among their "typical" peers to the full extent possible.

Who among us wants to be placed under unnecessary restrictions? Either at school or at home?

The trick is figuring out which boundaries and modifications are necessary and helpful for any given kiddo.

The modifications around our house, that we've put in place to have a safe and nurturing environment for Joy, have ebbed and flowed over time. Some things are constant -- in general, we try to help her focus by cutting down the clutter. There's one toy-box in the living room, one in the bedroom closet, and a set of toy-shelves in the downstairs playroom. We try to keep everything easily put-away-able. (Sometimes more successfully than others.)

We also try to keep down the temptation for things that could be pulled down to make a big crash & mess. The Christmas tree was up on the stereo cabinet. There are no plants in grabbing range, though she's growing to the point that she could knock one over if she tried...

Winter 2008 was an intense time for boundaries. Joy was climbing over the back of the couch to jump on the low bookcase that sits back-to-back with the couch, and knocked over the lamp that sat on top of said bookcase. So we bought a hanging lamp with a chain & cord that trails up the wall, and we covered a big piece of cardboard with wrapping paper and set it up as a barrier between the couch-back and bookcase. Joy was dashing into back bedrooms & bathroom at the slightest opportunity, so we kept ALL the doors closed ALL the time. She started pulling the music rack on the piano and dumping Rose's piano books off, so we tied the rack to the back of the piano with a piece of yarn.

In summer 2008 we put in the big barrier, just before I started blogging in fact! We got a fence for our big back yard.

One might think that a fence was a massive restriction. In a way, I suppose it is. But when we went into the backyard with Joy before the fence, we used to have to be on high alert. She had this little game where she would suddenly dash off, without warning, and head for freedom and the street. And she is FAST. So to keep her safe, we had to be within hovering distance, at all times, ready to sprint at any moment.

With the fence, we don't have to hover. In fact, we can give her a whole lot more freedom within that boundary than she used to be able to have. A perceptive friend at our fence party that summer noticed it right away. "She's so FREE!" was the comment.

It's my belief that as Joy came to recognize and heed the fence boundary, she started observing other boundaries as well. We were able to take down the cardboard from behind the couch. The doors in the back hallway stay open now, and Joy just doesn't venture back there. Rose accidentally broke the yarn on the music rack recently, and we didn't bother re-installing it.

The right restrictions, at the right time. A balance that we're continually trying to keep.

Another issue that we see coming up is the question of Joy's sleeping arrangements. She's currently in a tented-crib for the night, and a PeaPod travel tent for nap. These are designed such that she will not be able to get out, and since she's not toilet-trained, she doesn't really need to get out. It's also very helpful to us to have her confined to the crib when she wakes in the middle of the night and plays for several hours straight.

But she has technically well outgrown the specs of the crib. She's strong and getting bigger. We'll have to figure something else out, that can teach her to sleep in a big-girl bed and keep her safe and not impinge on her sister, with whom she currently shares a room. I don't think we're going to need something like these specialty beds (designed for a least-restrictive environment, by the way -- to "help the person live as normal a life as possible, with as few barriers as possible and still be safe"!) It's good to know the range of what's out there, though, as we make decisions on next steps. "Been-there, done-that" stories would be most welcome.

This post was sparked by Barbara at TherExtras, who is currently hosting a blog-carnival on the question of "how you have arranged your home to enhance your child’s development." I'm looking forward to hear how others have interpreted the theme!

In Praise of Awesome Daycare

I've mentioned Joy's daycare before, and officially dubbed her daycare provider "Lynda," after Lynda Carter of Wonder Woman fame. Today I'd like to let you know why we, and Joy, are so incredibly blessed in her daycare situation.

I work a part-time schedule. For the first two years of Joy's life, we had a daycare-swap arrangement with another family from church, who had a little guy only two days older than Joy. But after two years of swapping, the other family was looking to reproduce again and found another arrangement that would better suit an expanding family, so we needed to find something else. By that point, we were well aware that Joy was "behind" developmentally, and she'd been getting Birth-to-Three services for several months. We knew that we'd need something special, and we found it from a personal referral from a Birth-to-Three therapist, who had heard about what Lynda had put together in her home.

Lynda mixes things up with her daycare kids in two ways. She deliberately assembles a mixed-age group of children, regularly taking in new babies who then grow into years-long clients! And she deliberately puts together a mix of special-needs and neurotypical kids. Right now the mix is about half and half.

This daycare is a model of inclusion on a day-to-day basis, and she makes it look so easy. It really hit me the other summer one time when I dropped Joy off late and everyone was already out in the front yard, playing in a little wading pool. Lynda had the one girl with the most intense challenges (non-verbal, not very mobile, among other things) sitting on the bench of a little picnic table pulled up to the edge of the pool, with her feet in the water. Lynda was playfully pouring water over this girl's legs and feet, to a response of big smiles, while simultaneously tracking and interacting in turn with the other kids around the pool and in and out of the water, and managed to seamlessly welcome me and Joy as we arrived.

Lynda's place is therapy-central some days, with itinerant therapists from Birth-to-Three and the school district in and out to work with their various kiddie-clients. Joy's summer speech therapist was only there once this summer, working mostly out of our home, but her response to just one session at Lynda's was "This place is therapy heaven!" Lynda is eager to learn from the therapists and also make suggestions -- she's not a therapist by background, but has practically made herself into one by observation and continuing education.

Oh, and did I mention the reports? Every day during nap-time, Lynda writes up three or four paragraphs on each kid, with detailed specifics on their activities. Most days those messages are e-mailed to a private online group we have set up for Joy-reports, so JoyDad and I get to see them at work (only on the busiest days do they get handwritten). We've got the school-district therapists turning in their reports that way too, and Lynda's are easily the equal of theirs.

To top it all off, this week Lynda let me trade Joy-days because of vacation and holiday. I ended up having a day at home all to myself, though I did share it with JoyDad, swooped down on his workplace and whisked him off to a restaurant lunch.

Yes, she does read this blog -- thanks so VERY much, Lynda / Wonder Woman!