Saturday, December 31, 2011


During the holiday-preparation whirlwind earlier this month, I also had the chance to help out a couple of students doing end-of-semester projects relating to special needs. My niece interviewed me by e-mail with a series of questions about Joy's diagnosis and development and how our family manages. Between my answers and this blog, she wrote up a paper that earned her a 100% grade, highly satisfactory!

The other interview was by phone with one of the LEND trainees we mentored this fall, who had an occupational-therapy survey for me about OT goals and progress. There was one flavor of question that came up again and again, that I struggled with answering. The question had to do with satisfaction, on a scale of 1 to 10... how satisfied are you with the goal? How satisfied are you with your child's progress?

It's not easy to assign a meaningful number to a question about satisfaction! Thinking about it later, I realized that for every one of the progress-questions, I could have truthfully answered almost anything between 1 and 10 each time.

Of course I'm not satisfied! How can I be satisfied, when Joy is so clearly behind her peers in comparison, and likely always will be? We can't let ourselves be satisfied. We're always going to have to keep striving, pushing for the next step, giving it our all to achieve... first the possible, and then the impossible!

Of course I'm satisfied! Look how far this girl has come, look what wonderful progress she's made this past year! She's working with good people who are responsive to her needs and to our participation, and the forward movement is obvious. We've had extra affirmation of that in the visit we've got going on from GrandpaJ and GrandmaJoy right now, and what they observe in Joy just since their last visit in September!

Of course there must be a balance.

Satisfied can't mean "OK, we're done, no need to work any more." In our goals for Joy, our goals for ourselves, our goals for our state and country, quitting is not an option. We can't be stagnant-satisfied.

On the other hand, there is in our culture an almost pathological urge against satisfaction, against having enough and counting our blessings. We are bombarded with messages urging us to consume, to buy, to live better by acquiring more. The country is only now waking up to the pathology of the insatiability at the tippy-top of the income ladder, the barons whose individual wealth is greater than the GDP of entire countries, who are in the process of buying United States' political system. How many billions are enough, and at what cost to how many of the little people down at the bottom of the heap?

How can we learn to balance a truly grateful satisfaction with an appropriate moving-forward?

I'm reminded of the Jewish Passover song Dayenu, which tells of God's great gifts to the children of Israel: bringing the people out of slavery in Egypt, the miracles of being led and fed in the desert, the gifts of the Sabbath and the Torah. As each gift is listed, the chorus affirms "Dayenu" which translates as "it would have been enough for us" -- or, as in the version I first heard, "it would have satisfied us."

And yet, the scriptures tell us one story after another of the exodus in which the people were not satisfied and complained to Moses, complained to God. It would have been better if we had stayed in Egypt as slaves rather than come out here into the desert -- at least there we had enough to eat!

Satisfaction is a choice, an attitude, a commitment, whether we remind ourselves in song or otherwise.

I blogged about it only in passing, but last year instead of traditional New Year's resolutions, I chose three words to shape the year: active, tidy, relax. They rather morphed into "active, organize, relax" as events in Wisconsin exploded in February, and I never did manage the "relax" one very well. But active and organize took on new dimensions!

This year, I'm looking at these three:

Balance in the right kind of satisfaction; balance in schedule; balance in mindset.

Forward for Wisconsin; forward in goals for myself and goals for Joy; forward rather than stagnation.

Kindness in everything -- to myself, to those who disagree with me, to everyone I encounter.

What three words would make a satisfying 2012 for you?

Saturday, December 24, 2011

Songs of the Season, Part 3

Christmas Eve, and the final installment in this Songs of the Season series.

I wasn't the only one to set up an annual holiday letter with a musical lead-in this year. GrandpaJ and GrandmaJoy sent an entire letter premised on the blessing of music in their lives in 2011. Their letter began with a story that involved their granddaughter.

Both grandparents volunteer regularly to visit inmates at a correctional facility. GrandpaJ has been matched with one fellow in particular for quite a few years now, developing a cautious but meaningful relationship over time. In early December, this man sang a solo at the annual prison Christmas banquet, a "hearty rendition" (according to GrandpaJ) of O Holy Night.

He dedicated it to his friend's granddaughter Joy, and asked everyone to pray for her.

A dining hall full of prisoners in Kansas, praying for my daughter!

How marvellously unexpected, topsy-turvy, upside-down.

And all in celebration of the topsy-turvy arrival of God-With-Us, a baby born in an out-building among the farm-animals, while a dazzling host of angels brings the astonishing news to ordinary shepherd-folk in the fields.

Fall on your knees, O hear the angel voices!

Thursday, December 22, 2011

Songs of the Season, Part 2

JoyDad and I had a remarkable time at Monday's Solidarity Singalong! Hundreds of protesters filled the Capitol rotunda on the ground floor and balconies, singing recall-themed versions of Christmas tunes, in cheerful defiance of our governor's latest attempt to quash dissent. A resounding win for free-speech!

Photo credit madtowntj of Daily Kos

The re-purposed tunes of the Solidarity Singalong are at least somewhat analogous to a little ditty to the tune "The Farmer in the Dell" that we've
been experiencing a lot lately:

The A says "aaa", the A says "aaa"
Every letter makes a sound,
The A says "aaa!"

The song is from a series of products by a company called Leapfrog. (Link goes to a YouTube video -- I'd've embedded it, but it looks like they've disabled that option for this one.)

The "A says 'aaa'" phonics-washing of Joy began around the time of her birthday at the start of the summer, when she got a Leapfrog Fridge-Phonics toy from Auntie S as a present. The toy has a magnetic back, so you can stick it on the fridge -- or in our case, the fireplace.

You choose a letter to put in the slot, and then the toy sings the song for that letter. Or, push the little orange notes above the letter and it sings the familiar ABC song.

Some months after we got the toy, we discovered that the Leapfrog Talking Letter Factory DVD, which we'd gotten for Rose when she was just beginning her love affair with letters and words, had become acceptable to Joy as well. The cartoon story on the DVD involves a tour of a factory that makes letters, and sings through their "every letter makes a sound" songs one by one, with funny little additional mnemonics (for example, the E cups its hand to one ear and says "eh?" as if it couldn't hear you!) Joy particularly loves the opening menu-sequence, something she apparently shares with quite a few kids on the spectrum.

Then still more recently, just at Thanksgiving, we pulled out yet another saved Leapfrog artifact from Rose's toddlerhood -- her "My First LeapPad." Kids interact with this clever toy by touching a series of printed pictures with an attached electronic pen. You can buy a variety of spiral-bound books, each coming with its own game-cartridge. To tell the toy what page you're on in any given book, you have to touch the green "GO" circle on that page with the pen in order to get the correct noises that go with that page. It's definitely a couple of steps beyond the baby-toys that have been the staple of Joy's repertoire.

And guess what? We already had the "I Know My ABCs" book and cartridge, built around the "A says aaa!" song!

I was amazed how fast Joy figured out the sequence of turning on the toy, turning the pages of the book, and tapping the "GO" cicle. The latter is a particular accomplishment because the "GO" circle is at a different location on the perimeter of each page, in order for the toy to differentiate which page's fun to serve up. I love to watch Joy scan all the way around the edge to find the "GO"!

After all this musical phonics-washing, Joy now can fill in the blanks when we sing her a letter:

JoyMama: "The B says..."
Joy: "buh!"

And look what else she's been doing lately, another Rose hand-me-down:

One more Songs of the Season post yet to come... stay tuned!

Monday, December 19, 2011

Songs of the Season, Part 1

As the introduction to our annual Christmas newsletter this year pointed out, "the local oldies station has switched to 'all Christmas music, all the time.'" Christmas, more than any other holiday, comes with its own musical soundtrack.

The JoyFamily appreciates the holiday soundtrack -- JoyMama in particular was simply delighted with the Messiah singalong at church on Sunday! (Rose, in contrast, left the sanctuary at the first chorus, claiming that the singing and instruments were painfully loud.)

We have our own songs going on this season too.

I've written before about Joy's bedtime routine, that involves filling in the blanks for Rock-A-Bye Joy and Twinkle, Twinkle, with Joy filling in the words. In recent weeks, these songs have gone to a whole new level. They've become an interactive people-play, where Joy decides what will be rocked or twinkled and when it will happen.

It looks something like this: she'll bring me her stuffed penguin and cuddle up to me with penguin in her arms. Then she'll rock slightly back and forth, saying something like "WOH-woh." Which is my cue to sing:
Rock-a-bye PENGUIN, on the tree top,
When the wind blows...

... and Joy fills in some "peh-peh" word so I can continue
PENGUIN will rock!

The funnier the item, the better the Joy-giggles. One of my favorites has been the plastic tomato slice:

Twinkle, twinkle, little TOMATO!!

But wait, there's more! JoyDad and Joy then added a variation where Joy points to her own body-parts, with a one-finger point even, to direct him into verses such as:

Rock-a-bye KNEE, on the tree top,
When the wind blows, BELLY-BUTTON will rock!

The most recent variation has to do with a home-made board book dating back to Joy's days in daycare and early-childhood ed. The book has photos of people close to Joy, plus useful shots representing daycare, home, mealtime booster-chair, potty, etc. When Joy brings this book with a cuddle and a "WOH-woh," and starts flipping to the desired pages, we get something like:

Rock-a-bye GRANDMA, on the tree top,
When the wind blows, POTTY will rock!

I've got a few more musical offerings to share before Christmas rolls around next week. Meanwhile, though, I'm off to the Solidarity Sing-Along at the Capitol, something I've written about here and elsewhere. Today's singalong of holiday-themed protest songs will end up being a test of a set of new restrictive rules designed to quash protest, this regular protest in particular. Might be something of a showdown today, though it sounds as if the administration isn't going to try any mass arrests. I'm all dressed up respectable-like just on the off chance, though!

Keep singing, and I'll report more Joy-family song-related goodies in days to come...

Sunday, December 18, 2011

The Thinking Person's Guide to Autism

You've read the blog, now buy the book...

An essay of mine (writing as JoyMama) has been included in the print/Kindle version of The Thinking Person's Guide to Autism, now available at

Here's what Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science, had to say about the book:
"Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person's Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them."

It's a powerful list of contributors, self-advocates and family members and professionals, including blogfriends of mine Barbara/TherExtras, Jess at Diary of Mom, Kristina Chew, and Rachel Cohen-Rottenburg.

In time for the holidays, if you hurry... :-)

Wednesday, December 14, 2011

Community Contributions

I dropped Joy off at school yesterday morning in person, as I always do, walking her right up to the doors where the buses for kids with special needs stop. Joy pulls the door open herself... and yesterday she managed to get all the way inside without further help, a new inchstone!

The aide who meets Joy with an animated hug and peek-a-boo each morning hadn't made it all the way down the hall yet, so Joy and I hung out for a bit. As we waited, one of the janitors, a guy who's been at the school at least since Rose was in kindergarten 5 years go, came up behind us. I greeted him by name, he said hi and then came over to Joy. "Hi, Joy!" he said.

"HA!" answered Joy, with the charming little wave of greeting she's developed.

The janitor came close and hunkered down. "High-five, Joy?" he offered and put up his hand -- and she gave it a cheerful slap.

I was delighted that this guy knew my daughter, and took the time to greet and welcome her! As the aide stepped up a minute later, I shared my delight with her. She said that they've been working on the relationship; that he has a regular trash-collection route that takes him past Joy's table at the lunch hour, which is where the regular greeting has been established.

Even beyond the school day relationships with the children, this guy goes above and beyond to be part of the community at off-hours events as well. For example, he comes out for the school's annual fun-run and helps out grilling the bratwurst, just as much a part of the community as the teacher who traditionally leads the "silly warm-up exercises" at the event.

So when I hear things like a certain presidential candidate's recommendation "get rid of the unionized janitors... and pay local students to take care of the school" -- well, here's one unionized janitor that I'm glad to have in our lives.

High-fives for the janitors and their contributions to our school communities!

Thursday, December 1, 2011

ABLE Accounts and "A Bad Place"

UPDATE -- This post from 2009 had somehow disappeared from the web into "draft" status! I'm glad to retrieve it, because it's time for an update. The Achieving a Better Life Experience (ABLE) Act failed to pass in its 2009 incarnation, but was re-introduced in November as the ABLE Act of 2011. The link is to a widget from Autism Speaks that will help you to contact your federal legislators and ask them to sign on as co-sponsors. Please read the piece below -- it may be familiar, if you're a long-time reader of this blog! -- and then please click and contact. Thanks so much!

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"You're in a bad place."

That's how the lawyer summarized our situation, with regards to saving for Joy's future needs.

Not long after the births of Rose and Joy, we started saving for their future higher education needs, with our state's 529 educational savings plan, a nice tax-exempt way to be saving and planning ahead. We have a relative who has done the same for them in another state, too.

Rose is, pretty obviously, a very good bet for higher education eventually, little human dictionary and all.

With Joy, the educational trajectory has been so confusing. We really have no idea what will be going on with her by the time she finishes school (or the school system finishes with her). Heck, she's only four [update: now she's seven, and we still have no idea!]

But as she gets closer to entering the school system and yet keeps regressing away her various gains, we started to wonder about the wisdom of the 529 accounts for her. The rules of the 529 are clear: you can only use it for higher education expenses. If you take it out for anything else: big honkin' tax hit.

We surely don't want to sell Joy short, but it seems pretty clear that she's going to have some needs beyond the norm as she matures. Those needs may have to do with higher education, but they may not! We don't want our savings for her to be locked into something that's not flexible enough to meet her needs.

That's the situation that sent us to the attorney, to ask about the potential of a special needs trust.

That's the situation he shook his head at, and called "a bad place."

The thing is, a special needs trust isn't designed to be a place for you and other relatives to sock money away incrementally, like the 529 for higher education. The special needs trust is a vehicle where you move a big chunk of change for the later support of a disabled person, and it's highly hemmed around with restrictions to keep unscrupulous folks from using it as a tax shelter when disability isn't really the issue. You need to be very sure you've got an ongoing disability situation before you start down the special needs trust road, and then it's definitely lawyer-business (i.e. attorney's fees) to set up, unlike the 529 that you can do on your own.

But the 529 isn't a great bet for her either, given the uncertainty of her situation. The attorney didn't know what to advise us, except that there weren't any really good options for us.

We were told that federal legislation had been introduced in the past, to create a vehicle similar to the 529 but for expenses related to disability. But it had never managed to go anywhere.

Except that there's been a big election between then and now! [Update: hmm, the 2008 elections didn't manage to make the difference. Maybe there will be some traction as elected officials campaign for 2012?]

And... the legislation has been introduced again, both in the House and Senate, on February 26, 2009. It's called The ABLE Accounts Act of 2009 (ABLE stands for Achieving a Better Life Experience), and the bill numbers are H.R. 1205 and S. 493. [Update: the 2011 version bill numbers, introduced Nov. 15, 2011, are H.R. 3423 and S. 1872]

Here's a summary of the legislation (updated link & summary for 2011):
The ABLE Act -- introduced with bi-partisan support in the House (HR.3423) by Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA), and in the Senate (S.1872) by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC)-- would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.

And what could it be spent on? Glad you asked...
Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living.

Here is a link to the text of the bill itself (Senate version for 2011, in pdf). One element that I was glad to see: it looks as if one would be allowed to transfer money from an educational 529 into an ABLE account without the tax hit.

[In 2009] the bill was introduced in the House by Ander Crenshaw (R-FL), with co-sponsors Congressmen Patrick Kennedy (D-RI), Cathy McMorris Rodgers (R-WA), and Kendrick Meek (D-FL). In the Senate, it was introduced by Senator Robert Casey (D-PA), Senator Orrin Hatch (R-UT), and Senator Christopher Dodd (D-CT), and co-sponsored by Senators Richard Burr (R-NC), Edward Kennedy (D-MA), and Sam Brownback (R-KS). Update: in 2011, it was sponsored in the Senate by Robert Casey, Jr (D-PA) and Richard Burr (R-NC); in the house by Ander Crenshaw (FL), Chris Van Hollen (D-MD), and Cathy McMorris Rogers (R-WA). Bipartisanship, can you even believe it?!

Please take a moment to drop a note or call to your senators & representative urging them to support/co-sponsor this bill. There's a handy page for generating constituent support letters over at Autism Speaks, or you can look up your elected officials' contact information here and contact them directly.

If you can take a few minutes to do this, that would make us so happy! And you'll have earned the right to come back and brag about in the comments about how you're helping us get to a better place!

Do let me know if you have any questions, either in the comments or via e-mail.