Tuesday, October 31, 2006

Credible threat

The scanners have started picking up words and phrases like "oppositional," "defiant," "noncompliant," "he needs to understand," "crashing and banging," and "consequences to actions."

The scanners have not been picking up words and phrases like "dysregulated," "more space," "slow down," "we need to understand," "needs deep sensory input," or "reconsider our approach."

I'm bumping the threat level back to yellow.

Monday, October 30, 2006

3:30 is the new 4:30

I have come to really dislike the whole presto-change-o shake-up of Daylight Savings Time, because it wreaks havoc on my timeshift-sensitive son.

I'd foolishly been looking forward to this year's "fall back." For the past several weeks, in a radical departure from his summer sleep schedule, Bud has been sleeping in on school days, especially when the already dark skies were made darker by rain clouds. I was loathe to rouse him when he was sleeping so soundly (and when I could guess that he was in for a challenging day), and as a result we had more than a few mornings of rushing through the house in a frenzy to make it out the door on time. So, I thought, perhaps the time change would allow Bud's system to re-regulate to a more reasonable wake-up time and give us an opportunity to have a few leisurely mornings.

It re-regulated him alright.

Today our day started at 3:30 a.m., when Bud bounded out of bed with jet propulsion force despite the middle-of-the-night darkness that filled the house. It was clear from the moment he opened his eyes that he was up for the day.

I've been awake for 13 hours now and I'm still about seven hours and five projects away from falling back into bed.

I say we abandon this Daylight Savings business and start up a Nighttime Protection Program.

Anyone? Anyone?

Saturday, October 28, 2006

WhyNoStreMo?

Which is, of course, short for "Why Not Stress More?", the question I asked myself when I signed on to Fussy's NaBloPoMo and committed to authoring a blog post every day during the month of November.

No, actually I'm just being snarky. Blogging is something I enjoy doing; it's something that I do for myself. It's good for my mental health, good for my soul, good for my brain, and good (is this pathetic to say?) for my social life. But with the work- and weather-related stress in my life lately, I haven't made a great deal of time for blogging.

And this is about to change.

A post a day. I can do this. No worries. No stress.

Right?

Thursday, October 26, 2006

Effects are the lifelong-iest

As I've mentioned before, Bud often uses echolalia when he speaks. But he doesn't just quote short statements. He recites entire video scripts from start to finish, adopting accents and dialects as appropriate and even including sound effects and background music. He has a future in television or theater if he wants one.

He does the same thing with music. He learns songs thoroughly. He learns the drum beat, the bass line, the guitar solo, the pauses, and the background vocals, but mostly he learns the lyrics. At three years old, Bud could not sustain a back-and-forth conversation beyond Me: Do you want juice?, Bud: Okay, but he could sing Paul McCartney's Band on the Run from the first note through the last without missing a beat.

Some of his favorite music these days comes from the children's channel Noggin, whose host - the very talented Moose A. Moose - appears between programs to perform a wide array of musical numbers. The Noggin songs are terrifically complex, and they never underestimate a child's capacity to sustain interest in music with complicated melodies, syncopation, or lyrics. Bud adores them all.

Yesterday at school, the spirit moved Bud and he burst forth into song. His teacher, Mrs. Parker, had heard him perform this particular number before, but he'd never sung it with the full class as audience. She seized the moment, set aside the current lesson plan, yielded the floor, and let Bud take center stage as he performed for them all, singing at full voice, with complete note-for-note and word-for-word accuracy:

Days are the sunniest
Jokes are the funniest
Rabbits are the bunny-est
Hives are the honey-est
Elephants the ton-iest
Troubles - they're the none-iest

Everywhere I go!

Straws are the bend-iest
Time is the spend-iest
Cards are the send-iest
Books are the lend-iest
Fun's the pretend-iest
Friends are the friend-iest

Everywhere I go!

Berries are the fruit-iest
Shoes are the boot-iest
Puppies are the cute-iest
Treasure is the loot-iest
Teams are the root-iest
Horns are the toot-iest

Everywhere I go!

Birds are the tweet-iest
Candy is the sweet-iest
Socks are the feet-iest
Tricks are the treat-iest
Drums are the beat-iest
Lunch is the eat-iest

Everywhere I go!

Flowers are the smelliest
Jams are jelly-est
Rain's the umbrell-iest
Tales are the tell-iest
Wishing is the well-iest
Buttons are the belly-est

Everywhere I go!

Skies are the blue-iest
Cows are the moo-iest
Gum is the chewiest
Ghosts are the boo-iest
Goo is the gooey-est
You can be your you-iest

Everywhere I go!

The other children in the class were delighted. Some of them knew the song and joined in on the lyrics they remembered. But Bud was the only person in the whole class who could sing every word.

And he knew it.

He tried to downplay his achievement last night, acting as though it was no big thing... but he couldn't keep the smile from crossing his lips as Nana recounted the story of his performance to Daddy.

Bud was proud.

And so, in his honor, I offer you this final verse, penned by me:

Bud is the the song-iest
His teacher's cheers are strong-iest
The kids are sing-along-iest
And worries are so-long-iest
Cause school is can't-go-wrong-iest
When Bud feels the belong-iest

Everywhere he goes!

Friday, October 20, 2006

Thunderous applause

We've had our first thunder event since the crisis thunderstorm of several weeks ago. This one wasn't a real storm. There were no flashes of lightning or bone-rattling, house-shaking, ear-splitting cracks. But there was an unmistakable rumble - one that would have devastated Bud just weeks ago.

Today, he was concerned. Merely concerned. He asked for reassurance, he ran from window to window, and then he returned to what he'd been doing. The things we've been trying are working.

We've been talking about rain to Bud recently by using a story about angels - the angels are watering the flowers and the trees so the flowers and trees can grow and be happy. Maybe Bud realized that today, the angels were cheering him on.

Tuesday, October 17, 2006

A friend in need

My friend Teal is at wit's end with her live-in father-in-law, and I thought it might be prudent to turn to my wise resources in the autism blogosphere for some insight on the matter.

Teal's father-in-law, Ernie, a widower, has been living with them for several years. It has been difficult from the start, but over time it has gotten almost unlivable for Teal. Some of the highlights:

- Ernie is a collector. He goes to yard sales every Saturday and purchases old cameras and kits for model airplanes. He does not use the cameras. He does not build the models. He does not catalog them. He does not, in fact, look at them once they've been purchased. He stores them in cartons in Teal's basement. Until Teal declared mutiny and rented a storage unit this summer her very large basement was - quite literally - packed floor to ceiling and wall to wall with Ernie's "stuff."

- Ernie is not considerate. He makes demands on Teal's time (announcing, for instance, that he would like bagels from the bakery as Teal is rushing at top speed to get her children on the bus and herself off to work, expecting her to accommodate his whim and go get his bagels because he does not drive, and being shocked and offended when she does not acquiesce.)

- Ernie is (to put it mildly) not a people-person. He works as a science professor at a community college, but when he is not working he is sitting at Teal's kitchen table. All day long.

- Ernie has hygiene issues. He bathes infrequently. He does laundry even less.

- Ernie has skin problems. He picks at his problem skin while he is sitting at Teal's kitchen table, leaving shards of skin and drops of blood in his wake. Because he has hygiene issues, he fails to clean up after himself.

- Ernie is a creature of habit. His preference to stick with his habit often outweighs his desire to avoid contact with people, so when Teal has visitors Ernie stays at the kitchen table. When he does not enjoy their conversation, he puts his hands over his ears.

The list, I'm sorry to say, goes on from there. Recently, Teal has begun to compare Ernie's behavior to the DSM-IV criteria for Aspergers, especially 1) severe and sustained impairment in social interaction; 2) the development of restricted, repetitive patterns of behavior, interests, and activities; and 3) significant impairment in social, occupational, or other important areas of functioning, and it all seems to fit.

This realization, however, has thrown Teal into a bit of a tailspin. She cannot tolerate Ernie, but she wonders Am I being prejudiced and narrow-minded? She wrote in a recent e-mail:

(I imagine that) Aspergers (or whatever label you want to use as an example) isn't the only factor at work. I'm sure there's still the issue of personality. Of course, then you get into the chicken or the egg thing: did the Aspergers help shape the personality, or did the personality flavor the person with Aspergers? In terms of Ernie, I can only guess that Aspergers helped to define and shape the personality. For instance, the guy can't stand loud noises or lots of sensory stuff, and therefore learned to shy away from any situation that could possibly include those things, such as crowds, being with people, etc. And since he didn't know how to act quite appropriately (in social situations, anyway) people started to choose not to be with him - like in grade school, etc. On the other hand, I look at Bud, who clearly has a personality of his own that is not AUTISM, but just Bud - charming, funny, draws you to him, and I think that personality must not be shaped by disability. So, in all, I just don't know.

I wish I had insight for my friend. Ernie is not a child. Teal can't hire an OT to work with him or start an RDI program at home. Ernie is not interested in changing. But Teal is simply not able to continue living with the status quo.

So, blogosphere friends, what advice do you have for Teal? She is a warm-hearted, fiercely loyal person. Ernie is her husband's father, and she wants to do the right thing. But, as is so often true in life, the right thing remains elusive.

Realization and perspective

I made an important realization this week.

By a quirk of scheduling I had a day off from work during Bud's regular school week, which gave me six hours all to myself. I'd been looking forward to doing some shopping. Shopping has been a challenge since the onset of Bud's weather anxiety, because in big "box stores," like Target, the thumps and rattles of workers stocking shelves can sound like rumbling in the distance, and the rumbles reverberating across the high ceilings can be too disconcerting for Bud to withstand.

I'd especially been looking forward to this solo outing because it followed an extraordinarily difficult weekend trip to the grocery store with Bud, which involved a toe-to-toe stand-off in the produce section that ended with me carrying my taller-than-average tantruming seven-year-old sideways across my body through a long and busy parking lot.

So when the day came, I dropped Bud at school, drove to the mall, and set about the business of shopping. I wandered, I poked, I browsed, I purchased, and I accomplished more in one hour by myself than I would have in an entire day of shopping with my sidekick. It was a productive and efficient use of time. But it was also static, uninspired, and joyless. Two hours into my six-hours of "freedom," I was ready to be done.

In the planning, I'd thought about taking myself out for lunch, since Bud is currently eschewing the dine-in experience, making restaurant visits a rare event. But in the moment, when the time came for lunch, I just went to the drive-through because, I realized, it's not the restaurant food I miss now that we don't go out to eat. I miss the giggling over french fries. I miss the coloring on placemats together. And so the restaurant lunch of my fantasy, when played out in reality, would have been entirely unsatisfying.

I poked some more. I wandered. I watched the minutes tick along on my wristwatch. And then, with two hours yet to go, I climbed in the car and made the 40 minute trip back to Bud's school. I stopped for coffee, then sat in the parking lot grading papers until it was time to pick him up.

That's when I made the realization. It was surprising, but I'm grateful to have made it - especially now, in the midst of a time in which Bud and I are facing a lot of tough issues and difficult moments. This is what I realized:

A turbulent, challenge-filled day with Bud is infinitely better than a placid, uneventful day without him.

I think those six hours by myself were better for me than I'd ever dreamed they'd be.

Monday, October 16, 2006

Star light, star bright

Last night I tuned in to an autism benefit show on Comedy Central called Night of Too Many Stars: An Overbooked Benefit for Autism Education. I was tentative because I wasn't sure what to expect from a benefit show with a cast that drew heavily from the ranks of Saturday Night Live. I've also become skeptical of autism benefits in general, and I feared that I'd see a lot of bathroom humor mixed in with "public service announcements" that featured distraught and hopeless parents sending desperate messages about the crisis of this devastating epidemic that is stealing our children. I expected to hear about the race for a cure, and to see solemn-faced comedians telling me that every minute that passed without a cure was another minute lost for my son.

But I was very pleasantly surprised.

Okay, I admit, there was a bit of bathroom humor. But there was also Jerry Seinfeld. And Stephen Colbert. And - of course - the host who should be President, Jon Stewart. There was even a performance by one of my musical heroes, Elvis Costello. But better than all of that, there were clips of children and adults with autism. There were interviews with parents and teachers. The children smiled. The parents smiled. The teachers smiled. Parents talked about their children with pride. They reflected on how far their kids have come and talked eagerly about their hopes for a very bright future.

The focus wasn't on fear, or devastation, or desperation, or even cure. The focus of the benefit was on the transformative power of education in the lives of people with autism.

It was a good two hours. There was a lot of money raised. There were some pretty good laughs.

And there were some really great smiles.

Saturday, October 14, 2006

Budding romance

Love is in the air.

I've suspected for some time that Kelly loves Bud. She hasn't come right out and said it, but I've known it was true. It's obvious that she's fond of him - but, then, many of the children in Bud's class are fond of him. Each day at pick-up time, a group gathers around him. The boys give him high-fives; the girls hug him. He opens his palm to receive the high-fives; he stands still and allows himself to be hugged.

But there has been something different about Kelly. Kelly is always among the huggers - and she is usually the most enthusiastic of them. She's the first person to greet him when he arrives in the classroom each morning. And she recently painted him a picture and wrote both their names on the back. She gave it to him as Nana was getting him ready to go home.

"Oh, Kelly," said Nana, "This is a beautiful picture! I'll bet Bud would like to hang it on his wall."

Kelly smiled, and replied wistfully, "And then every time he looks at it he'll think of me?"

I have to admit, I've been worried that Kelly was setting herself up for heartbreak, as I've suspected that she was unknowingly embroiled in a love triangle: Kelly loved Bud, but Bud only had eyes for Mrs. Parker. But it seems that persistence may have paid off, and the tides might be turning in Kelly's direction. At the end of the school day yesterday as the students said their farewells for the weekend, Kelly approached Bud with her arms open. Bud turned to her, flung his arms open...

and hugged back.

Ah, romance.

Tuesday, October 10, 2006

Trust the process

I'm thinking about writing a book.

I keep saying it that way - "I'm thinking about writing a book" - despite the fact that I have already started writing - despite the fact that this blog itself is just a big old jumble of pre-writing. But a book is different from a blog. A blog can be edited and re-edited and deleted on a whim. A book has permanence and heft. A book is Significant and Important.

A book requires thought.

So I'm thinking about it. A book, I mean. Writing one.

But I'm starting to feel a little like Hamlet, spending a whole lot of time on the "to be or not to be" contemplation, and very little time on the actual doing of anything. I sit down at the computer and think, "Right. Book. Okay... Page 1," and my mind goes blank.

A couple of months ago, through the magic of Google, I tracked down my college writing professor to tell him that, twenty years out, I remembered his class, his advice, and his wisdom. I told him that as I developed a writing class of my own, I used his as a model. He wrote back to say that "of course" he remembered me (which, I think, says more about the kind of teacher he is than about the kind of student I was). We've been in touch a few times since, and recently I described my book-block to him.

He said that the solution was simple: Stop trying to write a book. Just let the book happen.

Yesterday, I had lunch with a writer friend who has published several books and who, it seems, is about to publish The Big One Which Will Make Him Wildly Famous. He's been supportive and encouraging about my Thinking About Writing a Book and has offered his help and direction. As I talked through my current paralysis, he suggested that I type out three words and post them on my wall:

Trust the process.

"Trust the process," he said. "It's not about you; don't try to make it about you. Have the courage to make a mess of your work, and to let the process unfold. Engage in it completely, and trust that it will move in the right direction."

And then I got it.

My friend had just described my philosophy of parenting: Don't make it about me. Be brave. Engage fully. Pay attention. Trust the process.

I do it every day with Bud. As he changes and evolves and grows and develops and morphs, I co-pilot without a guidebook or a road map - without, even, a clear sense of our destination. We just sit close together, hold on tight, and follow the Force. We trust the process.

And the process never lets us down.

So I'm trying it again. I'm plunging in and making a mess and navigating by instinct and watching to see what unfolds.

I'm trusting the process.

I'm writing a book.

Sunday, October 08, 2006

RDI financing redux

In a recent post I discussed my growing concern about two elements of the business side of the autism intervention model Relationship Development Intervention (RDI). I had two primary concerns:

1) The cost of the RDI "protocol," which is so high that it precludes its use by many (perhaps most) families, and

2) My perception that some proponents of RDI suggested that only those parents following the prescribed RDI protocol were doing "real" RDI, and those of use researching, studying, networking, and implementing on our own ran the risk of setting our children's progress back instead of moving it forward.

I was pleased, then, when a recent edition of the RDI newsletter addressed both issues. It reads,

We have never wanted to discourage parents who either cannot afford or do not have access to Certified Consultants, from attempting to work with their child using RDI® Program principles. We have certainly read and seen many accounts of exciting changes brought about by parents who were intuitively using our methods as they were intended. Yet we do highly recommend parents follow the RDI® Program protocol, including taking full advantage of the Parent Seminar and the expertise of Consultants because this is the best way to get the most effective RDI® Program. So far, parents needing outside funding have accessed it through a variety of sources.

The newsletter goes on to list seven sources of funding that RDI families have used and concludes with,

Our goal is for the RDI® Program in its entirety, (Parent Seminars, RDAs™, ongoing consulting, etc.) to be accessible to every family with a child on the autism spectrum. However, this is not something we can do by ourselves. Nor can this be done through FARR, whose charter restricts it from funding treatment programs for individual families. It is time for all of us, as a community to work together to help those who cannot afford RDI® Program services. The Connections Center wants to take a leadership role in this initiative, and has already started discussions with a parent who is willing to spearhead fundraising. What we need next is a non-profit foundation to act as the conduit and administrator for providing the funds. If you have access to a non-profit organization that would be willing to do this, or if you have any good connections to possible funding sources, please let us know. We do not want any child, teen or adult on the spectrum left behind due to lack of financial resources and are actively working on a solution. We welcome your ideas and your support and hope to be able to start providing RDI® Program scholarships in the very near future.

I'm delighted to see that the folks at the Connections Center are recognizing and addressing the very real issues of access. The RDI philosophy has made - is making - a tremendous difference in our lives. I hope it will continue to do the same for many, many more.

Tuesday, October 03, 2006

The high cost of "high function"

I have followed, with interest, conversations among fellow bloggers about the use of the terms "high functioning" and "low functioning" as descriptors of autism. They're not categories that I tend to use, because I think they're arbitrary, artificial constructs that are too situation-dependent to be of any real value: How high is "high"? How low is "low"? And how are we defining "functioning," anyway?

Even if we look at particular skill sets in isolation, it's difficult to clearly define what constitutes "high" and "low" functioning. Take language, for example. On the surface, we would assess a child who is able to use language conversationally as "high functioning" and one who is not as "low functioning," with a broad spectrum of ability between the two. Right?

I'm not so sure.

I began to consider this issue when I read Cammie McGovern's Eye Contact, a mystery novel set primarily in a school. Several characters in the novel are either identified as autistic or described in a manner that implies that they are on the spectrum. One boy, identified as autistic, uses very little language. His limitations in that area are fully recognized by other characters and he has staff who work closely with him as he successfully manages each school day. A second boy is articulate and verbose and, though he's not specifically identified as such, he appears to have Aspergers. Because he is smart and verbal, he is frequently left alone to navigate complicated and confusing social environments at school. As a result, he is bullied and assaulted by classmates.

I wonder: which boy has "higher functioning" at school?

I look around my real-life work environment and consider two young men, Christopher and David, who are in the incoming class of college students. I don't have any specific information about their neurology, and my conclusions about them are based only on observation and speculation. However, what I see tells me that Christopher may have some sort of language processing disorder. His writing is clear and precise, but conversations with him are slow. When asked a question, Christopher pauses, his eyes scanning the ceiling as if he's searching for a cue card stashed there. His pauses last an unusually long time, and are typically followed by a brief answer - sometimes as brief as "yes" or "no."

After a single conversation with Christopher, other people on campus can (and do) clearly recognize his challenge and make reasonable accommodation for him by slowing their rate of speech, giving him more time to process his response, and, when possible, providing him opportunities to converse through writing instead of speech.

David, by contrast, is quick with verbal comebacks and retorts. His answers are so articulate, in fact, that it's easy to get the impression that their acerbic bite is intentionally designed to insult the recipient. David talks at length about his areas of interest - his esoteric collections of things foreign to most college-aged people. He seems indignant and self-righteous when he insists that his peers must know what these things are, and that only an imbecile would lack such knowledge.

David enjoys playing his music (Peter, Paul, and Mary; Arlo Guthrie - not the standard Dave Matthews college student fare) frequently and loudly, much to the chagrin of his neighbors, who have complained to their Resident Director. When the RD asked David about it, he responded that things were going well on the floor. He knew this, he said, because every time someone had a problem with his music, they told him and he turned the music down. He reported that he got this request three or four times a day, and each time he happily obliged.

David was unable to generalize from the specific in this situation - to draw the conclusion that if his neighbors were asking him to reduce his volume four times a day, they would prefer that he keep his volume lower all the time. He was also unable to read the nonverbal cues from his neighbors, which most certainly indicated their decreasing patience with his continuing noise.

Again, I wonder: As Christopher and David progress through their first semester at college, who will be more successful in the world of college housing - slow-talking, less verbal, "lower functioning" Christopher, or fast-talking, more verbal, "higher functioning" David?

I thought about it a third time with an example much closer to home. Bud is verbal, but he continues to struggle with sustained conversation and he often relies on mitigated echolalia and scripts to make his points. Our blog-friend Owen, on the other hand, is very verbal and would be considered "higher" than Bud on the scale of verbal functioning.

Both Owen's mom, Tara, and I were nervous about our sons' transitions to school this year. Bud made the transition well, with extraordinary support from his teacher, classroom aide, and special education staff. Owen, on the other hand, was forced to withdraw from school after experiencing not just a lack of support, but also actions that made his transition more difficult - and, ultimately, impossible.

Clearly, one primary difference is that Bud is in a student-centered, collaborative school system and Owen was not. Beyond that, though, I wonder to what extent the staff of Owen's school underestimated the level of support he would need because they focused too much on the strength of his language and failed to recognize the challenges of his autism. By dismissing him as "too high functioning" to require significant accommodation, they created a dysfunctional - and now, a non-functional - learning environment for Owen.

It's examples like these that make me reject the "high-functioning" and "low-functioning" descriptors and regard them as inadequate, ineffective, and inappropriate. And, I have to say, if these are the classifications that will drive the services my son receives, that will shape the responses he gets from other people - if the degree of accommodation, understanding, collaboration and compassion that people will be willing to proffer will be based solely on their assessment of his "functioning level" - then I can sum up my philosophy in two words:

Aim low.