Meditations In An Emergency

Now I am quietly waiting for

the catastrophe of my personality

to seem beautiful again,

and interesting, and modern.

The country is grey and

brown and white in trees,

snows and skies of laughter

always diminishing, less funny

not just darker, not just grey.

It may be the coldest day of

the year, what does he think of

that? I mean, what do I? And if I do,

perhaps I am myself again.

~ Frank O’Hara

Pause

This is Serious Rob.
Originally uploaded by Citizen Rob

I've been somewhat absent from most of the online world for a short time now, and I guess I ought to post something about that. Not a word of explanation so much, because I'm not sure I can explain it this time more than any other. Really, I guess what I'm asking for is a bit of your indulgence.

For some reasons which are external but others no doubt on account of a familiar, tiny but reckless monster of my own, I am finding myself in kind of a dark place. If you've read my book or even this blog (or its online journal forefathers), you know that it's not the first time. You also know that I'll work my way through it, and take care of my personal and professional responsibilities as I do so. I've negotiated these waters before, through much worse storms.

I'm not much of a fan of those weeping, self-indulgent, never-ending depression posts on some blogs, and I know how very little you'd enjoy reading that sort of thing here. So I'll simply say that if I seem scarce for a few days, I hope you'll keep the faith a bit longer and be here when I come back. Because I always come back, and I do so renewed. And often with an amusing beard to show for it.

Thank you. I love you all, and shame on me for not telling you that more often.

fantastische Hosen

Trust

Trainspotting
Originally uploaded by Citizen Rob

Yes, I've been pretty invisible lately, sorry. Part of my absence has been a result of living inside my head lately and not really engaging with the world much. But mostly I've been quiet because, well, things have been quiet. Schuyler's out of summer school and in full-blown summer hobo mode, which she has certainly earned. I'm looking at writing projects, some of them new ideas and some of them things I've been kicking around in my head, but none of them ready for public discourse just yet. Given how fascinating it can be to endure the magical experience of writers writing about writing, that's probably just as well for all of you.

Summers are always a bit of a mixed bag for Schuyler. On one hand, she's built for summer. She could actually jump in the swimming pool first thing in the morning and spend the entire day in the water, and she would still offer petulant resistance if we told her it was time to go in at midnight. She doesn't burn, but instead turns a summer brown that is an alien concept to me, with my frighteningly white Gollum skin. She stays up too late, often watching inappropriate tv with me, and she sleeps late the next morning. She's a little girl in the summertime, and if she sometimes passes for neurotypical at school, during the summer she moves through that world with even less effort, like a Martian spy living undetected in our midst.

I exist in a constantly shifting state of trust and then suspicion where Schuyler is concerned. That's certainly nothing new. Last week, two days before Schuyler's summer program ended, I was sitting at my computer in the living room doing something unproductive and waiting for Schuyler's bus to bring her home. The bus was scheduled to arrive at 1:10 and had been consistently getting there at that time or maybe a few minutes earlier, aside from a few times it was late. The procedure was the same every day, as it needed to be. The bus arrived, I went outside and greeted Schuyler, the bus left. The driver released Schuyler to me. This is also the standard procedure, by the way, and not just for special needs kids. If you are willing to allow your kid to just be dropped off and left to their own devices, you have to sign a form stating such.

So you can imagine my surprise at 12:45 when I heard the front door open behind me. I assumed it was Julie coming home for lunch until I heard, "Hi Daddy!"

I think my face did that Japanese anime bugeye thing, accompanied no doubt by a loud "BOING!" sound, and I turned to see Schuyler walking in as if this was an everyday occurrence. I got up and went to the door in time to see the bus driving off. To be fair, it is entirely possible that the driver waited to make sure she actually got in the door, but I have no way of knowing either way.

It wasn't a tragedy. I was there, the door was unlocked, and it all worked out just fine. But what if I'd gotten caught in traffic and didn't happen to be home 25 minutes early? Schuyler doesn't have a key and doesn't have the dexterity or the hand strength to work the lock even if she did. Would she have sat outside the apartment in the 100+ degree Dallas heat? Would some kind neighbor have taken her in, no doubt calling the police or child protective services to come take her away? Or perhaps someone not so kindly would have taken her off our hands for us. Like any apartment complex even in the best of neighborhoods, we have a few lurking Boo Radleys wandering the parking lots.

It's something of an academic point since my paranoia guarantees that I would never be away from home in the hours before the bus dropped her off. But still. I sent an email to the school transportation director and got a phone call pretty quickly, and to his credit, he recognized how serious the mistake was and offered no excuses, only apologies. But it brought home to me just how much trust we as parents are expected to hand over to others in the course of our children's lives.

I recently read a cheerful little something on the New York Times Motherlode blog about parents and death. (I believe the discussion was sparked by the unknown fate of Michael Jackson's kids, because there is clearly no discussion being had anywhere in America that is not in some way about Michael Jackson.) It made me think about the discussions that we've had about what we would want to happen to Schuyler if the icy hand of mortality were to grab us both up at once. We have family members we trust, of course, but none of them live in places where the schools would be even adequate for her needs. We've even considered asking one of her teachers here in Plano to become her legal guardian in such an event so she could continue to go to school here. But how do you even have that conversation?

For now, we'll keep taking separate cars.

Guest Blogging: Marketing Tips For Authors

Squirrel monkey
Originally uploaded by floridapfe

For those of you who are writers, particularly of nonfiction, I wrote a little somethin' somethin' for Tony Eldridge's Marketing Tips For Authors.

I wrote specifically about developing a platform, which for nonfiction writers can be sort of a twitchy concept. "To even be considered for publication, you must have a great platform!", we're told, and yet it seems to be one of those terms that means whatever a particular agent or editor or publisher thinks it means.

Well, now you can add my particular take on the matter. That ought to keep everyone nice and confused. My work is done.

It's time for my stories

Schuyler is taking a summer school class, one that deals specifically with reading. Yesterday she brought home a little story book she'd been assigned, and she excitedly read the first story to me. I was so pleased with how well she did that I set up the camera and had her go through it again.

This will give you another opportunity to observe her verbal speech, along with the actual words that she's reading for comparison. Mostly, though, I just wanted to let her show off a little. Reading is a hard skill for nonverbal kids to learn, and I think she's kicking it old skool.

By the way, the story kind of sucks. (SPOILER ALERT) Hamsters are just about the slowest, laziest animals on earth shy of a sloth, and even sloths can climb trees. Well, what are you gonna do?

I have a face made for radio

Originally uploaded by Citizen Rob

If you're in the Dallas area, or if you like to listen to streaming programming on the web (and really, who doesn't), you can catch me on the radio this afternoon at 2:00pm central on the North Texas Kids Radio Show with Dr. Minette Riordan.

You might be tempted to think it's the End Times just hearing the words come out of my mouth, but I will be on The Word, KWRD-FM 100.7 Christian Talk Radio. Weirder things have happened.

Anyway, I think the interview went really well, and I don't think I said anything that will upset any tenderhearts out there in Radioland. If you don't happen to be listening on the radio, I'll post a link to the podcast afterwards.

So there you go.

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UPDATE: Here's the podcast:

Powered by Podbean.com

California

I thought about doing a detailed wrap-up of the 2nd Annual Microcephaly Convention, which we attended over the weekend and where I presented a speech, but I think my previous post probably expressed how we felt pretty well. It really did feel like we were attending what was going to be, unbeknownst to us, a family reunion. It was a life-changing experience.

Outside of the conference, we had a good time as well, aside from my issues with our rental car at the very beginning of the trip. Now, in my own defense, the car rental lot was in a dark spot underground. Furthermore, the attendant simply led us to the car, a Nissan Altima, and aside from opening the trunk before I got there (another crucial point in my defense, since I couldn't see what was printed in large letters on the back), she didn't say a word about any special properties the car might have. And I'd never actually driven a keyless car before, but the instructions said plainly that in order to start the car, one should simply press the ignition button. Also, Julie was not one bit of help, at all.

Having presented all my weak arguments, however, it is still embarrassing to the point of tragedy how long we sat in this car, repeatedly pushing the button to seemingly turn on the dash lights and then turn them off again, hitting the gas but hearing nothing from the engine, before some random synaptic event occurred inside my brain that instructed me to put the car in drive so that we could drive away in our soundless Hybrid rental car.

Anyway, here are some photos from the weekend.

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Schuyler and I signing books, which were purchased and then given out by the Prentke Romich Company, makers of the Big Box of Words and Pinkessa, and our very generous sponsors for this appearance.

Serious speech face

With Jenniffer Lewis, Founder, President and CEO of the Foundation for Children with Microcephaly. Schuyler loved Jenni immediately and with a tackle-hugging intensity that bordered on person injury. To her credit, Jenni loved her right back and was gracious and warm to our family, not once mentioning "Schuyler" and "restraining order" in the same sentence. Our daughter really can be a little stalker when she falls for someone.

Schuyler and Dr. William Dobyns, from the University of Chicago Department of Human Genetics. If you've read my book, you know that he is like the Wizard of Oz for parents of kids with genetic brain disorders; the importance and generosity of his presence at this conference can't be overstated. He commented on how well Schuyler's natural speech has progressed, which made me happy.

He was friendly enough to me and didn't mention the book, aside from a comment about how he's got PMG parents who now want speech devices for their kids that they can't afford and that the schools and insurance carriers won't pay for. Fair enough. I know my book has made things more complicated for doctors and teachers and school administrators. I'm not sorry about that, exactly, but I get it.

Demonstrating Pinkessa to author Vicki Forman and her daughter, Josie. Vicki's incredible book, This Lovely Life, is hitting bookstores soon and is already available for order. I am not exaggerating one bit when I say that it is the most astonishing and emotionally affecting book I've read in years, maybe ever. I'll have more to say about it soon, but you need to go buy it now. I mean it. I'll wait.

Schuyler and Josie, drawing together. Shortly after this, they ran into the ocean fully clothed and bodysurfed together. I'm not even kidding.

Schuyler apparently had some ideas about how Vicki should wear her hair.

Monique and Julie at the beach.

Probably self-explanatory.

Arriving back in Dallas with Jasper. He always brings her home.

prosapia monstrum

We are at the 2nd Annual Microcephaly Convention, and it's late. I really should be going to bed. California is two hours earlier than Texas, and it's been a long day. But I needed to say this now, while I'm still in the middle of it.

Tonight, Julie, Schuyler and I sat at a table with two other families, both of whom I feel like have become, in a short evening's time, part of our family, too. But in a very real way, they already were.

Because each of those families have a child with polymicrogyria, just like Schuyler.

They are the first kids with PMG besides Schuyler whom we have ever met. And they weren't the only ones here, not even close.

It's barely even begun, and yet we've already met amazing people at this conference, including Jenniffer Lewis, the remarkable young woman who first established the Foundation for Children with Microcephaly (which is now opening up to families with other related neurological disorders, like polymicrogyria & lissencephaly) and then put together this gathering, now in its second year. She did so because when she received a diagnosis for her child and then went to find some kind of support, there was nothing. She felt alone, and because she refused to accept that feeling, now none of these families have to feel that way.

I give my presentation tomorrow and again on Saturday, and suddenly I'm afraid that I won't be able to keep myself together all the way through.

But I'm not that afraid, because I also don't think it'll matter much if I don't.

Schuyler was never alone, of course. But tonight, that's more true than ever.

Calling Mister Furious

Oh, hey, look. A weasel.
Originally uploaded by Citizen Rob

My apologies for the length of this post. Sometimes it's good to get things on the record.

So Julie received a call this morning from a "legal mediation" company with a Very Serious Legal Issue to discuss with her. The person leaving the message on voicemail said "I don't even think you're aware of what's going on!" So, you know, very scary, and before breakfast, even.

(UPDATE: Apparently they called Julie's parents this morning, too.)

She called the number and got a high strung, angry gentleman at "the Office of the CRA". She was informed that she has an old credit card outstanding debt of over $9000, and unless she gave him her bank information RIGHT THAT INSTANT, the matter was going to go to court and the debt would be reported to the IRS as additional income, and no, we won't send you anything in print, and no, you can't have a moment, you need to give us that information right now now nownownownow!

Julie, not suffering from a head injury, declined to give Mister Furious our bank account numbers, thereby denying the Office of the CRA a sum so vast that they might actually be able to invest in not one but two tacos from Taco Bell. (But sorry, no beverage.) She did, however, keep talking, or rather she tried, but mostly she just listened to this guy with his unresolved anger issues. A few interesting points came out of his frothy rage, however:

• The credit card on which she had supposedly defaulted on $9000 in debt was one that was closed out a very very long time ago. Years ago, in fact, and the debt had been settled. More importantly, and this will perhaps not surprise you, the limit on that card was nowhere close to $9000. It might have been a thousand. Because, you know, credit card companies may not be smart, but none of them are dumb enough to give the Fabulous Rummel-Hudsons a $9000 line of credit. Certainly not way back then, during our wilder, dumber days.

• The contact address they had was that of Julie's childhood home, where her parents still live. It may have been listed at one time as a reference address, but it hasn't been listed as her home address since back when she was receiving lunch money.

• He repeatedly called her "Julie Hudson", which has in fact never been a legal name of hers. You can try a bunch of different combinations, but that's actually the only one that won't work.

• The most interesting piece of information came when Mister Furious heard me talking to Julie (probably suggesting creative and possibly physically challenging anatomical activities she should suggest to her caller), he said, "You can listen to me, or you can listen to your boyfriend there..."

That's right. Despite their claim to have her comprehensive credit and personal history in the file open before them, the Office of the CRA didn't know that Julie was married. In fact, it appeared that all the information they had on her was pieced together randomly and in most cases wildly inaccurately.

After Mister Furious hung up on Julie, I called them back to try to find out who they were and where they were calling from. I got Mister Furious again, except now he was using a different name. He refused to give any information and said he could only talk to Julie, not me. When I handed the phone to her, she was told that if we called them back again, it would be considered harassment. (Really? Because on this saved voicemail message, it really did sound like you were rather insistent that we call you.)

So there you go.

Here's the thing about this. I think this company is operating under an outdated business model. I suspect they're not entirely unaware of the issues at play since they demand payment information right then, during the call. Because if you have time to go online and start Googling their information, particularly the phone numbers from which they called and which they asked for a return call, you might find some interesting tidbits of information, both from other consumers and from legal websites.

So in order to help "the Office of the CRA" improve their procedures and have more success in scaring the crap out of unsuspecting marks, here's just a sample of what turns up in about two minutes of Googling.

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Google: 866-553-0428

CRA Collection Company, Inc.
1150 Lancaster Boulevard
Mechanicsburg, PA
(866) 553-0428

"does anyone know who this company is?? they somehow got my sister's number and is asking for me, claiming to be a law firm."

"who is this company? they are looking for someone who is not at my number and had even called my son in OK looking for this person. They say how important it is and that it is a very serious matter which needs immediate attention. Does anyone know who this is?"

"Paul from CRA called looking for me under a name I have not used in years. I have been divorced, remarried, and 3 kids since using this name. My oldest is in high school now. I live in a new state and number is unlisted. This is just crazy."

"I got a call from this number at my moms house. I have not lived at home for over 16 years. A Ms. Thompson is the caller and she tries to be very intimidating and almost a bully, but she will not give any specific details. My mom is ready to turn it in to the authorities."

"I just got a message from a Mrs. Karis at 866-553-0428. She left a message saying that she was looking for "RO" (married name) from "the city I grew up in." Which was strange because I haven't lived there in over 10 years. And I wasn't married when I lived there. I just felt it was very strange since any account I have with my married name I know is up to date. Do you just ignore this type of call? Or should I call back and find out what's going on? I would hate to think that they will be after my family members next."

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Google: 831-274-2477

"A lady called wanted me to relay a message to someone that's supposedly left our phone number as a contact. She just gave a six-digit case no. When I asked for what matter is it related to, the lady started yelling and became extremely rude and said it's none of my business. Caller ID showed the call was from 831-274-2477. She wanted the person to call back at 1-877-407-9274 with just a case no. What a rude scammer!"

"I just received a call (on the cellphone I use for the company that I work for). I do not know how "Kristin" got my phone #. She says she is with CRA company. She was rude and obnoxious and said that she had an urgent call for me, though I never identified myself. She also threatened that she would report me for not identifying myself or my company name. I don't have any debts that need collection, so I don't know why anyone would be phoning me- especially on my company cellphone."

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Google: 877-407-9274

"This has never happened to us! I'm glad I wasn't being too gullible tonight! They call from the same phone number 1-866-460-4260. The guy said he name was John Shelton. The guy said that he needed to speak to my husband urgently concerning a legal matter. My husband called back and spoke with a female (sounded white). We had to ask for a company name = CRA. They were unable to tell us what that stood for. They were very on edge, argumentative, and sounded threatening at times...claiming they would turn us into the IRS, if we didn't settle this now. They said that this was a last attempt to collect on a credit card debt before legal action would be taken. They stated that this was on his credit report and needed to be taken care of now. They said they only take credit/debit payment (Go figure). The card/debt they were referring to has been taken care of and the card has been canceled for many yrs, and we know for a fact that it is not on the credit report. My husband hung up on the woman, and she called right back from a different #. She said, "Mr. XXXXX, I can't help you with this, if you keep hanging up. What other legit company would ever do that. She was asking for his SS# and all kinds of stuff! I just want to turn these low life losers in, so they can get caught! It's a shame!"

"Calling all of my daughter's relatives, threatens to serve paper's, she is going to be arrested, calling her elderly grandparents, parents, says it is on excessive debt on a non existant credit card debt of a limit that she was never approved for. The woman "FLIPPED" out, was YELLING, CALLED my daughter CRAZY, would not confirm any information. "

"CRA woman became agitated when i asked for her address, refused, said she'd only been calling for a month, that they were not a collection agency but a 'mediation service.' supervisor Stephanie Martin came on line, said they'd never called me before today, i'd be taken off list. i said i'd been trying to stop calls for a year and a half. also refused address then hung up."

"Harrassment
"866-452-9518 called my neighbor advising her that I gave them permission to contact them to get info about me. My neighbor knew better than this and told them she has nothing to tell them. They then proceeded to advise her that they are going to press charges if I do not call them back. I called them to tell them to NOT call looking for me ever again & I Never gave them authority to call my neighbor advising them that I said they could. The guy started yelling at me sayibg he wouldn't have to call if I paid his client monies owed. I asked what client? What monies? He refused to answer and continued yelling. I hung up the phone. I will be reporting them to FTC as well."

"These people called my Uncle\'s ex- wife from 1988 and initially stated that they wanted to deliver a package and needed to verify the address. That did not work so the called again and stated that they were calling from the office of CRA and some investigators needed to speak with him immediately. I called them back multiple times and they hung up on me whenever I asked what CRA stands for and what type of company were they. Finally they advised me that they were the Consumer Recovery Associates."

"These people caled me 8 months ago, had the wrong first name, middle initial and SS#, told me it was a mistake. They have since reported nick name, alternate SS# to the credit bureau and are now harrasing me again. I think these people are scum. They also stated I made the last payment from an address I had 9 years ago just 6 years ago so it is within the statute of limitations, what idiots! I complained to the FTC and the VA Attorney General! I hope the hard inquiry comes off my credit report and they leave me alone for good. This account is apparently outside the SOL anyway."

Here's a big one:

"If you receive a call from this number, you have been called by junk debt / collection agency that buys debt from original creditors that has been written off or settled and is beyond the statute of limitations in most states. They are trying get the money for themselves, not the original creditor.

They are reportedly a serial violator of the Fair Debt Collection Practices Act (FDCPA). They may be illegally using credit information obtained from Experian or other credit reporting agencies.

This company has been known to contact and harass people they believe may know the person they are trying to reach including distant relatives, ex-spouses and possible former co-workers.

NEVER answer these calls if you see this as a caller ID. NEVER return these calls. NEVER give them ANY information about the person they are seeking or refer them to others.

Any "positive" comments you read in these notes about the company may have been written by employees of the company.

The company is:

Consumer Recovery Associates
2697 International Parkway #4
Suite 270
PO Box 2916
Virginia Beach, VA 23450-2916

The following is the most comprehensive information gathered about this company from various sources on the Internet.

***If you've been called by a number not on this list or by someone using a different name, please copy this list, add the number/name in the correct order and repost it in its entirety.

Company Names that CRA reportedly uses:

CIA and Associates
CC Associates
Consumer Credit Association
Consumer Recovery Associates
Court Company
CR Associates
CRA Associates
C&R Associates
C & R Associates
Farm CIA & Associates
J Lamb and Associates
and possibly GC Services

Phone numbers that CRA reportedly uses:
(list redacted because it is crazy long.)

Individual names that CRA reportedly uses:
(also redacted for length, but the woman who left the voicemail, Mister Furious and his Furious Twin are all on the list)"

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And finally...

Pennsylvania Consumers Challenge CRA Security Systems' Collection Practices

Bradley v CRA Security Systems, Inc.
CASE ID: 3131 | CREDIT / DEBT | 02/06/2004

A statewide class action has been filed in Pennsylvania against CRA Security Systems, Inc. and their parent company, Capital Recovery Associates, Inc. The action is brought on behalf of all Pennsylvania residents who received a form type collection letter demanding immediate payment of the consumers' alleged debt. The action is brought under the federal Fair Debt Collection Practices Act and seeks statutory damages as well as injunctive and declaratory relief.
According to consumers, CRA used language in its initial collection letters that was confusing and deceptive. Federal law requires that all collection services include a notice in their initial collection letters that informs consumers of their right to investigate the validity of a debt within 30 days. Although CRA's letter contained this notice, consumers allege that other language in the letter overshadowed the notice and rendered it ineffective. Specifically, the letters requested immediate attention by remitting payment. Consumers allege that by demanding immediate attention and payment, they were unable to determine if they were given 30 days to investigate the validity of the debt, or if they were required to pay immediately. Additionally, the letters were allegedly "signed" by Richard Lyons. According to consumers, there is no viable evidence to suggest that a Richard Lyons reviewed their debt or that Richard Lyons is even employed by CRA. However, consumers claim this "signature" is meant to convey to them that the debt had been reviewed by an actual person. According to consumers, CRA also routinely charges allegedly illegal fees for returned checks. Finally, even after repeated attempts to dispute the validity of the debts, many consumers claim that CRA never provided them with validation.

Under the Fair Debt Collection Practices Act, any unfair, misleading or intimidating language is forbidden in collection letters or other forms of communication. The consumers allege that the language used by CRA fulfills this standard. They claim that CRA's language overshadows and renders ineffective the 30 day notice of disputing the validity of the debt. They claim that CRA's use of a signature that is allegedly bogus conveys a false and misleading impression that an actual person has reviewed their account, when in fact the letters are "form" type and mass mailed. Finally, consumers claim that CRA typically ignores all attempts to dispute the validity of the debt and continues with coercive efforts designed to elicit immediate payment. According to consumers the potential class is quite numerous, numbering in the thousands, and perhaps tens of thousands.

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So there you go! Best of luck, Office of the CRA. Also, we filed reports with the Attorneys General of Texas, Virginia and Pennsylvania. You really should check out this Internet thing. I didn't even have to put my pants on!

Stephanie's Day in Dallas

If you're there today, keep your eyes open, we might just be around...

www.stephaniesday.com

Stephanie's Day, "A FREE Resource Fair for children with special needs and their families/caregivers" at NorthPark Center, Saturday, June 13, 2009 from 10am-2:00pm. Stephanie's Day was founded by CBS 11/TXA 21 President and General Manager, Steve Mauldin, in honor of his daughter Stephanie who has autism.

Kids can enjoy music, games, entertaining activities, and much more at Stephanie’s Day. Meanwhile, parents and caregivers can find a wealth of resources available through local non-profit organizations, therapy centers, advocacy groups and parent-to-parent networks.

This is a FREE EVENT located at NorthPark Center in Dallas, Texas.

NorthPark Center

8687 N. Central Expressway

Dallas, Texas 75225

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Update (and postmortem)

If I had one criticism of the event, it would be that the organizers need to decide if they are interested in holding a general special needs event or one that focuses exclusively on autism. I think either one would be great; I certainly don't begrudge anyone in the autism community the attention such an event would attract, particularly in the present media environment where autism continues to receive so much focus. The rising tide lifts all the boats, as they say. I suspect every kid with a disability benefits from that kind of attention. not just the ones with autism.

But aside from a handful of specific providers (CP and fragile X, for example), the focus of the event was definitely on autism, which shouldn't be a surprise considering how it began. But I do think they ought to consider either working hard to expand their scope to include a much wider range of disabilities or making this about autism outright.

That's my sincere opinion that exactly no one asked for.

Not surprisingly, Schuyler managed to sneak into the tv coverage for a second or two...

On the radio

Julie shot some video while I was being interviewed on a local Christian radio show. Just for fun.

The truth, in a whisper

In answering a comment on my last blog post, I found myself admitting something, out loud, that I haven't let myself say for about six years. I didn't even realize how long it had been, or that I was about to say it in that moment, until the words appeared on my screen.

"...Despite the mountain of evidence and opinion against the idea, I honestly believe that one day, she will be able to talk. Perhaps not as clearly as the rest of us, but I don't think this is as good as she'll get, not by a long shot."

It's funny what the heart holds onto and whispers quickly and quietly while the brain's not paying attention. It's funny where the agnostic can still find faith.

Storyteller

Today, as we drove home from work, where Schuyler spent the afternoon with me, I asked her what she wanted to listen to on my iPod. She loves the music from Coraline and asked for that, and as the music played, she began telling me the story of the movie. She didn't use her device; her thoughts were coming fast and furious, and so for the next few minutes, I was treated to her retelling of the story, with wild gestures and lots of pantomime, and very little intelligible speech.

When we got home, I asked her to tell me the story again for the camera, and she gave me a much-shortened version.

In the past, I've posted video of Schuyler in which a lot of you said "Oh, I can understand her just fine!" The reality of Schuyler's speech, however, is that removed from predictable context, it becomes much more challenging. I will say that in this video, I can understand more than I can't, and I'm sure Julie would be able to as well. But this will give you a more accurate picture of how she speaks.

And how much fun she is, too.

SoCal with the RumHuds

The fam
Originally uploaded by Citizen Rob

A courtesy note for stalkers...

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Southern California Meet-up with the Rummel-Hudsons

Robert, Julie and Schuyler will be in Costa Mesa, California for the 2nd Annual Microcephaly Convention, June 18-21, 2009. If you aren't attending the conference but would like to meet the Rummel-Hudsons, join us on Thursday afternoon or Sunday morning for a little informal get-together.

June 18, 2009 | 12:30pm

The Beach Pit BBQ
1676 Tustin Avenue

Costa Mesa, CA 92627

June 21, 2009 | 10:00am
West LA Farmers Market in Santa Monica
11360 Santa Monica Blvd
West Los Angeles, CA 90025

RSVP to info@schuylersmonster.com

Sponsored Silence and the Big Box of Words

This video was put together by the Ohio Speech-Language-Hearing Association and the Cincinnati Children's Hospital Medical Center to promote awareness of augmentative communication. The 2008 Sponsored Silence Event was made possible in part by support from Cincinnati Children's, and by DynaVox and the Prentke Romich Company, the two industry leaders in AAC speech technology.

On a personal note, I really hope you'll set aside ten minutes of your day and watch this. I've seen a lot of presentations like this, but for some reason this one reached me in a deeper place. Which is my way of saying that I sat here like a weepy little girl when I watched this. I don't know, maybe I have Issues.

In the next few weeks, I'm planning on putting together a video project similar to what Nancy Zimpher, President of the University of Cincinnati, discusses in the video. Will you watch because you want to learn more about AAC, or do you simply want to watch me look like a tremendous dumbass? I think there are possibilities either way.

Two Out of Three Authors

"Two Out of Three Authors..."

New at Gregory's Bistro
in Historic Downtown Plano
Tuesday, June 16 - 7 pm
1022 E 15th Street, Plano, TX

Meet local authors Karen Harrington (Janeology) and Robert Rummel-Hudson (Schuyler's Monster) for an entertaining night of stories, writing advice and thoughts on a year in the life of a debut author.

Admission is free, but come early as seating is limited. Gregory’s Bistro is BYOB.

Karen Harrington is the author of the suspense novel Janeology, a unique blend of legal drama and psychological suspense that poses the question, how much of what a person does is due to nature and nurture?

Karen’s writing has received recognition from the Hemingway Short Story Festival, the Texas Film Institute, the Austin Film Festival and Writer’s Digest. Prior to publishing her novel, she was a corporate speechwriter for EDS and Greyhound Bus Lines.

Robert Rummel-Hudson is the author of the memoir Schuyler's Monster: A Father’s Journey with His Wordless Daughter. The book tells the story of raising a little girl with a disability and learning to become the father she needs.

Robert has been writing online since 1995. During that time, his work has been recognized by the Diarist Awards. His story has been featured in articles in the Austin Chronicle, the New Haven Register, the Dallas Morning News and the Fort Worth Star-Telegram. He has been featured on American Public Radio’s Weekend America, WFAA’s Good Morning Texas and KERA’s Think with Krys Boyd.

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In which I impart actual useful information

I asked some of the amazing people I've met at the Prentke Romich Company if they could point me to studies actually illustrating that AAC use contributes to overall language and/or speech development, not just providing a voice but actually aiding in the development of other communication methods, including verbal. I should have known they would come through. One of the things I love about PRC is that the people who represent them in the field aren't sales representatives. They are SLPs and therapists, they are the same people who fight our monsters and they do so with real weapons, the ones they believe in.

And when it comes to AAC and its implementation, they know their stuff.

Anyway, here are some direct quotes from the book Exemplary Practices for Beginning Communicators: Implications for AAC by Joe Reichle, David Beukelman, and Janice Light. I'll have more to share soon.

(There are also some further resources listed at the end, so you can... Read More About It!)

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1.) "Although some existing research literature and recommended practices data support the notions that even very young children and other beginning communicators can use and benefit from AAC (e.g., Pierce, 1999; Romski & Sevcik, 1996), some professionals still believe that AAC is a last resort to be tried only after all other interventions have failed and the individual is still not talking (Romski, Sevcik, & Forrest, 2001). This belief may contribute to why AAC is often not incorporated into prelinguistic intervention strategies. Typically developing children primarily rely on gestures to communicate until about 12-13 months of age, when they increasingly use speech for communication (Goldin-Meadow, 2000). Using a developmental perspective, AAC interventions (e.g., gestures, devices, switches) can be viewed as tools to develop prelinguistic skills and set the stage for later vocabulary development regardless of whether the individual eventually talks."

2.) "Previously, it was assumed that individuals need to demonstrate the prerequisites of sensorimotor stage V for sufficient symbolic understanding to begin to learn how to use AAC (e.g., Chapman & Miller, 1980; Owens & House, 1984). It was later recognized that individuals can acquire some of the presumed prerequisite skills much earlier through the functional use of AAC in naturalistic environments (Kangas & Lloyd, 1988; Reichle & Karlan, 1985)."

(Quote specific to speech output devices:)

3.) "Romski and Sevcik (1996) argued that the use of a speech-output communication device was a critical component of their participants' successful use of SAL (System for Augmenting Language). They contended that the speech output provided a link to the natural auditory world for participants. Yet, no direct comparison of SAL acquisition (speech+symbols) with learning symbols alone was provided. Schlosser, Belfiore, Nigam, and Blischak (1995) conducted a study on three individuals with severe mental retardation who would have been considered beginning communicators. The researchers compared the participants' acquisition of visual graphic symbols and speech output with the acquisition of visual graphic symbols alone. They found that the speech output + visual graphic symbols resulted in more efficient learning with fewer errors than the visual graphic symbols alone. These results support Romski and Sevcik's argument that speech output can play a critical role in AAC language learning."

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Pierce, P. (1999). Baby Power: A guide for families using assistive technology with their infants and toddlers. Chapel Hill: The University of North Carolina Press.

Romski, M.A. & Sevcik, R.A. (1996). Breaking the speech barrier: Language development through augmented means. Baltimore: Paul H. Brookes Publishing Co.

Romski, M.A., Sevcik, R.A., & Forrest, S. (2001). Augmentative and alternative communication in inclusive early childhood programs. In M.J. Guarlnick (Ed.), Early childhood inclusion: focus on change (pp. 465-479). Baltimore: Paul H. Brookes Publishing Co.

Goldin-Meadow, S. (2000). Beyond words: The importance of gesture to researchers and learners. Child Development, 71, 231-239.

Kangas, K.A. & Lloyd, L.L. (1988). Early cognitive skills as prerequisites to augmentative and alternative communication use: What are we waiting for? Augmentative and Alternative Communication, 4, 211-221.

Reichle, J. & Karlan, G. (1985). The selection of an augmentative system in communication intervention: A critique of decision rules. Journal of the Association for Persons with Severe Handicaps, 10, 146-156.

Schlosser, R., Belfiore, M.A., Adamson, L.B. (1995). The effects of speech output technology in the learning of graphic symbols. Journal of Applied Behavioral Analysis, 28, 537-549.

Doctor Leaf responds

I got a response back from Dr. Leaf, which he gave permission for me to print. He followed up this response with another, expressing his displeasure that I posted my own letter before he had a chance to respond, thus opening himself up to criticism from all of you and further confusing the issues without having a chance to respond. He's got a point, actually. (Honestly, I didn't really expect a reply; I figured my email had enough of a "random kook" vibe to go straight to the delete folder.) My sincere apologies, Dr. Leaf.

I have to say, in all honesty, that I'm not sure that I agree with him that his quote was taken entirely out of context. In reading his response, however, it strikes me that the wording in USA Today ("If we could get children to talk without using technology, that would be our preference.") is a pretty indelicate distillation of what he says here, and I do agree that it doesn't represent his position very clearly.

Most of all, I appreciate that he took the time to respond, and I'm happy to pass that response on to you.

And yes, I do expect the rest of you to address me as Dr. Rob from now on. I mean it. I didn't not go to medical school so you could call me Mister.

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Dear Dr. Rummel-Hudson,

I appreciate the opportunity to respond to your concerns. All too often people are not given a chance to respond and even sometimes create controversy perhaps when there is none.

Unfortunately, my quote was taken out of context. As I told the reporter, I believe augmentative devices are very useful. It is the reason why I often recommend schools and parents utilize any devise that will give their children the opportunity to communicate their desires and equally important connect socially with their parents, brothers and sisters and friends.

However, it would be parents’ and professionals’ dream for their children to be able to communicate without augmentative devices, just as we would prefer for children to be able to be successful in school without needing an aide. Or we would prefer that a child would not need medication to control their behavior. But when this is not possible or if it is a lengthy process then anything that will help our children is a godsend!

I am concerned that in the world of Autism the expectations are woefully low and too often people settle for a prosthesis when a child could actually learn the skill. In our clinic we find among preschool age children about half of them already have functional speech even before treatment and this is consistent with what the research literature shows. The research also shows that of those remaining 50% who are nonverbal, the vast majority of them can develop meaningful speech with intensive early intervention and will not require AAC devices (or PECS, or sign language, etc.) either as a means or alternative to vocal speech. This has been our clinical experience as well. I encounter so many families who have been told to simply accept their child’s handicap and are discouraged from seeking treatment that could make an enormous difference in children’s lives. It’s amazing to see how excited people become over a new device and fail to recognize that the it might not be necessary.

We think children deserve to have the highest level of independence possible. If that turns out to be best achieved through use of state-of-the-art AAC, I am thrilled. But if a child could be talking and is not given the opportunity to access state-of-the-art education and treatment, I am greatly saddened.

Nothing I have said should detract from the joy of parents and accomplishments of children who really do need alternate modes of communication.

Regards,

Ronald Leaf
Autism Partnership

Calling out Doctor Leaf

Ronald Leaf, director of Autism Partnership, a private California-based agency, says he prefers to help autistic children such as JW learn how to navigate their world without gadgets. "If we could get children to talk without using technology, that would be our preference," he says.

("iPhone applications can help the autistic" - USA Today, May 28, 2009)

Dear Dr. Leaf,

I was saddened and disappointed to read your comment in the USA Today article about the Proloquo2Go application for the Apple iPhone and iPod Touch. I felt it was a glib dismissal of a technology and a communications philosophy that has helped and will continue to help thousands of young people who are unable to speak but deserve to be heard.

I am the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter, a memoir that tells the story of raising a little girl with a rare brain malformation that leaves her unable to speak. The book ends, and her future begins, when she is given an augmentative alternative communication device that helps to facilitate her speech. Four years later, because of this technology (in her case, a Vantage Lite, produced by the Prentke Romich Company), Schuyler spends the better part of her day in a mainstream third grade class alongside her neurotypical classmates. She recently passed the modified TAKS test (the No Child Left Behind component for the state of Texas) and is on track to continue her schooling and even graduate from high school. Where four years ago, she was pushed off to a special education Life Skills class and was given no prognosis for an independent life, Schuyler may very well get a chance to live whatever life she chooses. None of these possibilities were placed on the table until she had the ability to speak and to learn how to construct language. All of this, because AAC technology gave her a chance.

Schuyler is hardly alone in her achievements. Her story is only unusual in that she was ultimately able to receive the speech device that could help her. She and her fellow AAC users represent only a fraction of those nonverbal kids who stand to benefit from this technology. AAC helps thousands of kids and adults find a voice and overcome a wide range of disabilities, from Schuyler and her polymicrogyria to kids with cerebral palsy or, yes, autism. As you are no doubt painfully aware, the frustration of being unable to speak can be as crippling to a child as any physical or mental infirmity. I have seen it time and time again, children who were not just nonverbal, but closed up inside an internal world of their own, unable to make the basic human contacts that they needed so desperately. All because they had to struggle simply to make their most basic needs known.

Kids who use AAC technology gain more than words on a "gadget". (In all fairness, that was a word used by USA Today, not yourself.) They find a door into a larger world, a door once locked but now ajar and ready to be kicked open. Those of us who have watched AAC technology at work have found that when these kids are suddenly able to speak through the use of electronic assistance, they show dramatic improvement in other areas of communication such as sign language and even verbal speech. This effect is of particular interest, and promise, to children on the autism spectrum.

"If we could get children to talk without using technology, that would be our preference." As the parent of a child who can't speak but who has a world of things to say, I must confess that I'm baffled by that remark. If you are saying that you'd rather see these kids use their natural voices than a computerized voice, then of course I agree. But what if the path to finding that natural voice involved technology, as is so often the case? Would you dismiss that technology so casually if there was even a chance it could help?

There's more than just a chance.

Dr. Leaf, you were quoted by USA Today because you were perceived as an expert in your field. I sincerely hope that you will take this opportunity to educate yourself about AAC technology. The next time you are called upon for answers and for wisdom, you might just change someone's life, and give them a voice.

Robert Rummel-Hudson
Plano TX

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Update: Dr. Leaf's response...