May 31, 2009

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.

May 30, 2009

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.


-----

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

May 28, 2009

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.



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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May 26, 2009

Pinkessa and the Purple Cow

A short video of Schuyler using her device at dinner. Nothing earth-shattering, just a glimpse at how she uses Pinkessa in a normal dinner setting.

May 25, 2009

Memorial Day, 2009

I have no idea who put this together, but I'm glad they did. When I think of Memorial Day, I don't think of flags and pretty flowers, or speeches and justifications. I think of this piece of music. This is the "Libera me", the final movement of Benjamin Britten's War Requiem.



Libera me, Domine, de morte aeterna,
in die illa tremenda:
Quando coeli movendi sunt et terra:
Dum veneris judicare saeculum per ignem

Tremens factus sum ego, et timeo
dum discussio venerit, atque ventura ira.
Libera me, Domine, de morte aeterna.
Quando coeli movendi sunt i terra.
Dies illa, dies irae, calamitatis
et miseriae, dies magna et amara valde.
Libera me, Domine.

(Deliver me, O Lord, from eternal death
in that awful day
when the heavens and earth shall be shaken
when Thou shalt come to judge the world by fire.

I am seized with fear and trembling,
until the trial shall be at hand and the wrath to come.
Deliver me, O Lord, from eternal death.
When the heavens and earth shall be shaken.
That day, that day of wrath, of calamity
and misery, a great day and exceeding bitter.
Deliver me, O Lord.)


-----



It seemed that out of battle I escaped
Down some profound dull tunnel, long since scooped
Through granites which titanic wars had groined.
Yet also there encumbered sleepers groaned,
Too fast in thought or death to be bestirred.
Then, as I probed them, one sprang up, and stared
With piteous recognition in fixed eyes,
Lifting distressful hands as if to bless.
And no guns thumped, or down the flues made moan.
"Strange friend," I said, "here is no cause to mourn."

"None", said the other, "save the undone years,
The hopelessness. Whatever hope is yours,
Was my life also; I went hunting wild
After the wildest beauty in the world,
For by my glee might many men have laughed,
And of my weeping something had been left,
Which must die now. I mean the truth untold,
The pity of war, the pity war distilled.
Now men will go content with what we spoiled.
Or, discontent, boil bloody, and be spilled.
They will be swift with swiftness of the tigress,
None will break ranks, though nations trek from progress.
Miss we the march of this retreating world
Into vain citadels that are not walled.
Then, when much blood had clogged their chariot-wheels
I would go up and wash them from sweet wells,
Even from wells we sunk too deep for war,
Even the sweetest wells that ever were.
I am the enemy you killed, my friend.
I knew you in this dark; for so you frowned
Yesterday through me as you jabbed and killed.
I parried; but my hands were loath and cold.

Let us sleep now...

("Strange Meeting" - Wilfred Owen, 1893-1918)

-----



In paridisum deducant te Angeli;
in tuo adventu suscipiant te Martyres,
et perducant te in civitatem sanctam
Jerusalem. Chorus Angelorum te suscipiat,
et cum Lazaro quondam paupere aeternam
habeas requiem.

Requiem aeternam dona eis, Domine:
et lux perpetua luceat eis.

Requiescant in pace. Amen.

(Into Paradise may the Angels lead thee:
at thy coming may the Martyrs receive thee,
and bring thee into the holy city
Jerusalem. May the Choir of Angels receive thee
and with Lazarus, once poor,
may thou have eternal rest.

Lord, grant them eternal rest,
and let the perpetual light shine upon them.

Let them rest in peace. Amen.)

May 19, 2009

Movie night


On Tuesday nights, Julie has rehearsals for a wind ensemble she performs with, so these are usually movie nights with Schuyler and me.

Tonight she picked two movies beloved by little girls everywhere.

Cloverfield and Jurassic Park II.

She invited some friends to the second one.

May 18, 2009

No macaroni


Red again
Originally uploaded by Citizen Rob
I got a call this morning from Schuyler's teacher to discuss Schuyler's issues from last week. No one's overly concerned, I don't think, since the issues between Schuyler and her little frenemy seem to be both reciprocal and complicated. Yes, they are extremely competitive and can go for the jugular at times, and that remains something that we all need to work out.

But on days when one of them is absent, apparently the other will ask about her with concern and spend the rest of the day in a state of anxiety. While I don't see us scheduling any play dates over the summer (never say never, but can we have that play date near a liquor store?), I can accept the complexity of their extremely competitive but oddly co-dependent relationship. They are Adams and Jefferson, Rommel and Patton, Magneto and Professor X, God and Lucifer, Ernie and Bert. I think I'm going to stay out of it for now, at least until they marry each other.

In the course of the conversation, Schuyler's teacher shared another piece of information, one that she'd just received herself. It was the world's tiniest atom bomb, delivered casually but rocking our world; Julie started crying immediately when I told her.

The TAKS-M reading scores came in this morning. Schuyler passed.

Now, let me be clear. My feelings about this test and its inappropriateness for any kids, but especially for special education students, haven't changed a bit. My impressions about how Schuyler did on this test were based on her performance on the practice tests taken shortly before the real test, in which her scores were extremely low. Clearly something changed between that and the actual TAKS.

How did she do it? How did she go from a score in the low thirties to a passing grade? Schuyler's teachers worked hard with her and her classmates, but I was encouraged to hear them say that they weren't going to sacrifice a lot more time to this test at the expense of the actual curriculum. They worked with Schuyler on focusing on the task in front of her, rather than simply coaching her to do well on this particular test, and I can get behind that completely. That's a skill she needs, and one that has eluded her in the past. I think Schuyler passed this test because she was given the right tools to do so, but I also think she simply didn't like the idea of failing. I suspect her poor performance on the practice tests just plain pissed her off. And as we've all discovered time and time again, sometimes an insulted ego can be Schuyler's best motivation.

I believe more strongly than ever that these tests waste valuable teaching time and for most special education students present little more than an opportunity to remind them of how far they have to go. TAKS has little (if any) educational benefit to the students, in my opinion, and simply presents one more obstacle in the lives of kids who already have enough hurdles to scale as it is.

But once again, Julie and I and everyone who works with Schuyler are faced with a lesson that we've been given the opportunity to learn time and time again over the past nine years. Never ever ever ever underestimate Schuyler, even if we are doing so out of concern for her well-being and her developing self-esteem. She may be a smart little girl, or she may just be a stubborn little pain in the ass. But she doesn't like to be told what she's allowed to do, and she doesn't like to be told what she CAN'T do.

May 15, 2009

Two unrelated Schuyler stories


Red again
Originally uploaded by Citizen Rob

1) Condolences

Last week, I received an email from one of Schuyler's teachers. Actually, it was one of those e-cards, and along with the music, the condolences message and the animated candle, there was a note. "Schuyler told me that your father had passed away and I wanted you to know that you and your family are in my thoughts and prayers."

It was a very sweet message. It really made me kind of sad to have to write her back and say that while yes, it's true that my father passed away, it wasn't exactly a fresh tragedy in our lives. My dad died in 1990.

I'm not sure why, but Schuyler is a little obsessed with the topic of my father's death. I think the asymmetry bothers her, for one thing. She has a mother and a father, and so does Julie. The fact that I do not seems to bug Schuyler.

It's also the only real-world death that she's ever had to think about. Being Schuyler, she thinks about it a lot. She turns it over and over in her head, trying to make it fit in her world, like a puzzle piece. I've never shied away from the topic with her, and so she freely (and often) asks questions. When we drove past a huge, beautiful Jewish cemetery in Brooklyn, she asked if my dad was there. When she sees someone sick on television, she will ask me "Like your dad?" It's one of the reasons I have decided to delay my book about fatherhood for a few years. I think she might have something interesting to say about the topic when she's a little older.

Recently, Schuyler asked me if my father is a zombie or a mummy. Perhaps I need to start paying closer attention to what she watches on television.

-----

2) Frenemy

It took me years (and the arrival of the Internet) to get my own, but Schuyler is ahead of the curve.

At the age of nine, she has her first nemesis.

They started off as friends, and if you ask Schuyler on a good day, she'll insist that they're not just friends, but close friends at that. This girl joined Schuyler's AAC class this year, and for the longest time, she and Schuyler were inseparable. They seem close in skill level, and they're both ambulatory, so it seemed natural for them to become friends, especially since Schuyler's previous best friend no longer attends her school.

Over the course of the year, however, the relationship has grown... complicated.

Now they can't leave each other alone, but as often as not, they are antagonizing each other. They disrupt class, they insult each other and are intensely competitive. When her friend gets upset, Schuyler knows exactly how to push her buttons and keep her in a state of anxiety. The stories that come home to us don't even sound like Schuyler anymore.

They sound like me.

It's been a recurring state of affairs for the past few weeks, and at this point we all seem like we just want to run out the clock on the semester and start fresh next year. Schuyler had a particularly rough day yesterday after trying to get her little frenemy in trouble, and it's going to be a long weekend of no TV, no computer and no hamster. (Swee has moved into our room for now, and last night I got an answer to a question I've had since we got him. Yes, he does use his wheel at night. A lot.)

Last week, Schuyler got in trouble at school during an argument with her friend in which the insults escalated to them calling each other "stupid". That's obviously a troubling word for them to be throwing around, especially since as special education students, it's one that they get to hear from the rest of the world enough as it is. I confess that I have developed a kind of prejudice against neurotypical kids, as hard as I try not to. I see a few of them snub Schuyler at her after school program when she tries to tell her "friends" goodbye, too cool to be seen talking to the Weird Girl. It's only a few of them, but it still makes me crazy.

But with her friend, it's hard, because they're both on the same side of that fight. "Stupid" is a word that I hate to hear her use against another SpEd classmate in particular, and so we all sat down and talked for a long time about respect and about the things we should never ever call someone else. I felt like a hypocrite, of course, and I made a little vow to myself to be more careful what I say about other drivers when we're in the car. I guess in that respect, we're lucky she called her friend "stupid" and not something along the lines of "fucknuts".

After our talk, it was obvious Schuyler was thinking about something intensely. She was clearly troubled by something. Finally she said, "Daddy, can I talk to you?"

She says this a lot, for reasons that we're not quite sure of. It feels a little like the movie cliche "Permission to speak candidly, Sir!" I think, however, that it's mostly her way of saying that she's got something important to say, so listen up and pay close attention. She started punching something up on her Big Box of Words, making sure she got her statement just right before speaking. As she activated the speech, she put her hand over her mouth, as if she was speaking forbidden words. I had to look away so she wouldn't see my smirk.

"But I think she is stupid."

She has since recanted that sentiment, but let it never be said that Schuyler can't hold a grudge. I have no idea where she gets it.

-----

Update, 7:00pm

Ugh. She came home today with an even worse note. Apparently during art class, she called her friend's picture "stupid", too. Ironically, she couldn't spell it right for me when I asked her to tell me on her device what she said. She's learning how to spell the word right now, in her room, over and over on a pad of paper, like I had to do when I was a kid. If she loves this word so much, she at least needs to know how to spell it. We're going old skool.

And for the record, I never hate myself more than when I am disciplining her like this.

May 14, 2009

A few linty items from my Fancy Pants pockets


Schuyler's Monster
Originally uploaded by Citizen Rob
I have a couple of things of a self-promotional nature, begging your indulgence.

First of all, this Saturday, I will be appearing at The Richardson Public Library for the Homegrown Writers Open House and Book Signing, sponsored by the library and the Writer's Guild of Texas. We'll have some copies of the paperback to sign and sell, so if you live in the area and would like to come get a book signed in pink by Schuyler, or if you're a scary stalker and have been waiting for the perfect moment to strike, here you go. I'll even provide a map since I know how frustrating it can be to get lost on the way to a good stalking.


View Larger Map

My second item is for Kindle users. I know that my book was available for the Kindle for a while, but was withdrawn after it was discovered that the scan of the book was sort of crappy and unreadable. I've been told that it's being redone, but I haven't heard anything in a while. Frustrating, but not much I can do but wait. Well, you know, wait and bitch. Which I appear to be doing right now.

In the meantime, however, Amazon has a new Kindle service: blog subscriptions for the Kindle. So if you've always wanted to be able to read this blog on your snazzy Kindle reader, then today, dear hipster, I am here to make your dreams come true.

Because that's what I do. I'm a giver.

May 10, 2009

Superheroines

Granting from the outset that I am perhaps not speaking from a position of objectivity, it is nevertheless one of the great coincidences and treasures of my life that the two best mothers I have ever had the privilege to know have been my own mother, Beverly, and my wife, Julie. They've both been tested beyond what most mothers have to deal with, and like the quintessential action superheroes that they are, they've both come through the fire as stronger, better people.

My mother's adversities aren't ones that I'm going to write about. They are her stories and not mine. If she ever decides to tell them, I would happily serve as her biographer, but somehow I don't think that's very likely to happen. I will say simply that the years in which I was in junior high and high school were hard for her (not because of me, although I was definitely a little shit), so hard that I honestly didn't always know that she was going to survive it. She made mistakes, like any human being, but she paid for them more dearly than most. Her own mother committed suicide a few years before I was born, and during the worst of my mother's struggles, I always half expected to get called down to the principal's office, to find a police officer waiting or to take a phone call with the most terrible news a kid can receive, the same news she'd received all those years before.

I never got that call, because although even she wasn't aware of it at the time, my mother was made of stronger stuff. She's a survivor, and although I don't get the chance to tell her very often (like most action superheroes, she doesn't like hearing about her exploits), she's one of my heroes.

If, as is often suggested, men spend their lives trying to find a woman who reminds them of their mother, I couldn't have done much better than Julie. When I met her, she was twenty-one. It's funny to think back on that, but it's true. Twenty-one. Even then, it was clear that she was mature and capable of taking on big things in her life. We never dreamed that the big thing she would end up tackling would be a monster, however, or that it would be holding her child hostage and would require negotiations for the rest of their lives.

Motherhood is hard. Motherhood for a child with a disability is almost more than a person should be expected to take on. Sometimes people like to say that God never gives us more than we can handle, but those of us who have seen a lot of families with disabilities know exactly what a bullshit idea that really is. God overwhelms plenty of people; there are a lot of mothers and fathers who can't take it, can't face the loss of their imaginary Future Child and its accompanying narrative and can't handle their new reality. A lot of parents give up, bug out, disappear or live in a state of protective denial.

My book was about my perspective as a father, and I would have never felt comfortable trying to tell Julie's story. But it's a story that should be told. Julie is a lot less introspective than I am, and she spends a lot less time second-guessing herself or trying to come to terms with Schuyler's situation. Julie didn't have much use for God before Schuyler was born, but when we received the diagnosis in 2003, I think Julie discarded whatever lingering belief she might have had. Julie didn't need a God who would hurt her child, so she jettisoned him, rolled up her sleeves and took on the task herself.

Julie has been a rock for Schuyler, and for me. Her book would probably be much shorter than mine. Perhaps it would be one sentence long. "My daughter needed me, so I did what I had to do, and I did it with joy, because I love her with everything I am. The End."

The late J.G. Ballard wrote a followup book to Empire of the Sun in which he wrote about a life spent in the company of extraordinary women. I've lived that life as well, and the most amazing of them all is still growing, still developing. Schuyler is just beginning her own journey into a future as a superheroine, and she does so with the benefit of the two best role models I can imagine.

Happy Mother's Day, Julie and Mom. You're the best, and that's the truth.



May 5, 2009

Macaroni


Pinkessa's new ride
Originally uploaded by Citizen Rob
Last week, according to the news media, we were all supposed to be pooping ourselves in fear of the H1N1 ("Hiney") Mexican Pig Death Flu of the Apocalypse, and yet most of the anxiety Julie and I were aware of was from teachers here in Texas. Because last week, friends, was TAKS testing week. Abandon hope, all ye who bubble in answers here.

TAKS is the Texas Assessment of Knowledge and Skills. It's a standardized test given to primary and secondary public school students to assess their skills in writing, reading, science, math and social studies. No extra points awarded for roping and riding skills, sadly. It's tied to No Child Left Behind and federal dollars for schools and whatnot, and therefore it is apparently a Very Big Deal. We first began hearing about it during Schuyler's orientation, back during the summer, and not just casually mentioned, either. TAKS anxiety began in a very real way seven months before the testing began.

Standardized testing presents a host of problems to neurotypical kids, but for kids with special needs, those problems become even more problematic. In the case of the TAKS test, there is a modified version for kids like Schuyler, one that contains the same information but has modifications such as larger font sizes, fewer items per page, fewer answer choices and simpler sentence structure. There's also a more profoundly modified TAKS test for students with significant cognitive disabilities. Federal guidelines for NCLB require that all students, including special education students, take the test, and at their grade level rather than their ability level. No exceptions.

I don't know. On one hand, I feel like if we're really going to get behind the idea of inclusion, then I suppose being subjected to these horrible tests along with the neurotypical student population might just be part of that deal. And yet, it feels wrong to me. These are kids whose every educational experience has to be approached carefully and individually. Federal law requires the schools to develop an IEP (Individualized Education Plan) for every kid with a disability. These plans are carefully crafted by the student's entire support team, including the parents and sometimes the actual student, so that the particulars of that child's disability are addressed. Now we're asked to believe that a single version of a standardized test that has been universally modified is going to fit the needs of every special needs student in the big dumb state of Texas? You think? Because if it turns out that they're all broken in exactly the same way, that's certainly going to save a lot of people a lot of work.

The word that I'm getting is that these kids aren't doing well on these tests, modified or not, and that they are being demoralized by the experience. I'm not sure what we're hoping to gain from compelling special education students to take a test that many of them are simply unable to complete, not due to a lack of trying or an academic deficit, but because a disability interferes with their ability to sort through questions designed for neurotypical kids at their grade level. We add to the already daunting pile of frustrations that they face every day in school and in life, frustrations that we can't even begin to understand. What do we hope to accomplish from this? In what way does this benefit the students? We don't learn anything about the quality of the school or the teachers from these tests. We simply become one more little vampire, draining away another pint or two of hard-won self-esteem, and all for what amounts to phony educational window-dressing. Julie and I call this kind of thing "macaroni art".

Back when we lived in New Haven and she attended a general special education "Life Skills" class, little Schuyler would bring home these elaborate arts and crafts projects, ornate and sometimes even beautiful (inasmuch as art made from macaroni can be beautiful), but clearly not created by Schuyler. Every now and then, there would be some awkwardly placed scribble or randomly glued blob of paper on an otherwise pristine art piece, and we could see Schuyler's contribution. Macaroni art became a big joke to us, the idea that her teachers believed that it was in everyone's best interest -- theirs, Schuyler's and perhaps ours most of all -- to send home something clean and pretty and irrelevant. It was one of the most tangible indications that we needed to move.

Now we're in a different world, one where Schuyler is being challenged. But I honestly can't see how the TAKS test has any educational value. It's not a challenge so much as an obstacle. Despite her good classroom grades, Schuyler apparently didn't pass these tests, and didn't come very close.

Schuyler is on track to complete school and perhaps graduate one day. That sounds like a miracle, or even a dream to us. But there's a reality to be faced, too, and it's the same one faced by countless other families trying to make their way in mainstream education with broken children. Schuyler is going to get there, I truly believe it, but the obstacles she faces and has faced all along are slowing her down. Her curriculum is modified, and although she's thrown into the mix of neurotypical third graders, she's not there with them. Not entirely. Not yet. When she gets there, it will be at her own pace, and that pace is going to be determined by her teachers and her parents and most of all by Schuyler. But her monster gets a vote, too.

Fortunately, I finally found out yesterday, her advancement to the next grade level is an issue that will be decided by her ARD (Admission, Review and Dismissal) Committee, not the TAKS test. The ARD Committee determines what services a special education student requires from the school district, via the IEP. It consists of (among possible others) her special ed teacher, her mainstream teacher, her SLPs, an administrator (usually the principal), and us, by golly. So at the very least, we're not expecting to be caught unaware if there's a decision to hold her back. That could be a contentious meeting -- God knows we used to have THOSE on a depressingly regular basis, back at Schuyler's old school near a city whose name I won't mention but which rhymes with "Boston" and is full of hipsters, and, well, is called Austin -- but at least we won't find out from a letter in the mail.

Grade level advancement is a tough issue, because on one hand, we want her to advance, and she desperately wants to as well. She talks about fourth grade all the time now, even though we've been extremely careful not to ever mention it in front of her. If she gets held back, it's going to be a bitter disappointment to her. And it would be difficult to explain to her, after doting on her good grades all year, to then have to turn around and tell her she's not ready. But at the same time, if she moves on and she's not ready, it could all come crashing down in the future.

After the amazing year Schuyler had last year in second grade, I think we felt this year like we could finally relax. We didn't need to be the ever-present parents, looming overhead and trying to monitor Schuyler's day-to-day progress. But even though we trust her teachers now and feel very positive about her school situation, I nevertheless feel like we might have dropped the ball, particularly where her mainstream class experience was concerned.

At one point, we were discouraged by a teacher from getting involved in a project that was being done "in school". What Schuyler ended up with felt like macaroni art. Julie and I promised each other afterwards that we would never agree to something like that again. Ever. Occasionally we hear from teachers who say, "I wish there were more parents who get involved like you guys do!" And while I appreciate that, I also sometimes think, "Really? Are you sure about that?"

We were so happy that she was getting A's and B's in her modified curriculum that I think we neglected to get as involved as we should have this year. And I don't think Schuyler's modified curriculum was inappropriate, not here, in a special education program that is the envy of most schools not just in Texas but nationally as well. I suspect the education she's receiving exceeds what most special education students are getting. But we believe she can do better, much better, and I'm starting to think that in some way, perhaps small but still significant, Julie and I might have let Schuyler down this year.

Next year will have to be different.