June 1, 2009
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.
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.
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.
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!)
-----
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."
-----
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."
-----
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
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
-----
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.)
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 14, 2009
A few linty items from my Fancy Pants pockets
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.
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.
April 28, 2009
A little light reading
A surprising number of people have emailed me to ask for a copy of the keynote address I delivered to the Texas Speech Language Hearing Association's 2009 Convention at the beginning of the month.
The requests have mostly been coming from people who were there, which is nice. I would have thought it would have been enough fun just sitting through it once.
Anyway, if you're interested and have absolutely nothing else to do with your time, here it is, in all it's verbosity. Click and enjoy.
Anyway, if you're interested and have absolutely nothing else to do with your time, here it is, in all it's verbosity. Click and enjoy.
April 27, 2009
Unthinkable
The tragic story of Maddie Spohr has been making the rounds online, and it's one about which I have been conspicuously silent. Better writers than myself have written about Maddie and the unique role that social media has played in her story getting the attention that it deserves, so I'm not going to add much further, except of course to explain why I haven't had anything to say about it until now.
Quite simply, it's not a topic I can think on at great length before my mind begins to feed on itself. Losing a child is one of the very few topics that I would classify as unthinkable.
The other night (and here's where you get to judge me a little), Julie and I were watching Grey's Anatomy together. We watch each other's shows together sometimes. Julie's finally off the hook with Battlestar Galactica, alas for my Friday nights, but I still join her for American Idol (which we both mock mercilessly, as if we ourselves aren't sitting there watching it along with everyone else) and Grey's Anatomy. I don't want to like it, and there's plenty about the show I don't care for, but there I am on the couch with Julie every week. It's sort of pathetic. BSG really has left a big hole in my tv heart.
(Having said that, if you really need a Grey's Anatomy SPOILER ALERT at this point, you are more pathetic than I, and I'm glad you exist in the world.)
Last week's episode included the story of a terminally ill little girl and her desperate father, a man trying so hard to find a miracle cure for his daughter that he comes very close to missing her final moments. "This next part, she needs her daddy for this part," says one of the characters, and as the little girl slips away, she does so in her father's arms as he comforts her with a description of Mexico, on the trip they'll never take together now. ''Just relax and we'll be there soon,' he says.
Well, you can imagine how I reacted to this. We both sat on the couch with tears in our eyes, staring for just a tentative moment into that void where parents usually refuse to even glance. I finally looked over at Julie and said, "You know if anything ever happened to Schuyler, I wouldn't make it."
"I know," was all she said.
I occasionally hear about what a strong father I am, simply because I've stood behind Schuyler and fought for her all this time, but it's false praise. It doesn't take strength to fight for Schuyler. The honest truth is that it's the easiest thing in the world to do. It's my pleasure and my privilege to do so. It's easy because it's a multiple choice question with only one answer, but more than that, as corny as it sounds, I get to participate in the life of the most amazing human being I've ever met, or will likely ever meet. I get to live with that person every day of my life. Who wouldn't sign on for that? That's not strength. That's selfish opportunity.
When I read about parents like Heather Spohr and Vicki Forman, I get a glimpse of what true strength really is. It takes strength to face the one thing that no parent should ever have to face. It takes strength to go to that funeral, and most of all it takes real strength to get out of bed the next morning, and the morning after that, and all the mornings that follow.
One day, hopefully not terribly soon, Schuyler will have to say goodbye to her poor sad father. If the universe proceeds the way it should, she'll say goodbye, and she'll put on a pretty dress and then she'll put me in a box or an urn and she'll give me back to the earth. It'll be a hard day for her, and I'm genuinely sorry to put her through that, but it'll be a sad page from The Way Things Are Supposed To Be.
To me, as weak as I am, the alternative is unthinkable.
Quite simply, it's not a topic I can think on at great length before my mind begins to feed on itself. Losing a child is one of the very few topics that I would classify as unthinkable.
The other night (and here's where you get to judge me a little), Julie and I were watching Grey's Anatomy together. We watch each other's shows together sometimes. Julie's finally off the hook with Battlestar Galactica, alas for my Friday nights, but I still join her for American Idol (which we both mock mercilessly, as if we ourselves aren't sitting there watching it along with everyone else) and Grey's Anatomy. I don't want to like it, and there's plenty about the show I don't care for, but there I am on the couch with Julie every week. It's sort of pathetic. BSG really has left a big hole in my tv heart.
(Having said that, if you really need a Grey's Anatomy SPOILER ALERT at this point, you are more pathetic than I, and I'm glad you exist in the world.)
Last week's episode included the story of a terminally ill little girl and her desperate father, a man trying so hard to find a miracle cure for his daughter that he comes very close to missing her final moments. "This next part, she needs her daddy for this part," says one of the characters, and as the little girl slips away, she does so in her father's arms as he comforts her with a description of Mexico, on the trip they'll never take together now. ''Just relax and we'll be there soon,' he says.
Well, you can imagine how I reacted to this. We both sat on the couch with tears in our eyes, staring for just a tentative moment into that void where parents usually refuse to even glance. I finally looked over at Julie and said, "You know if anything ever happened to Schuyler, I wouldn't make it."
"I know," was all she said.
I occasionally hear about what a strong father I am, simply because I've stood behind Schuyler and fought for her all this time, but it's false praise. It doesn't take strength to fight for Schuyler. The honest truth is that it's the easiest thing in the world to do. It's my pleasure and my privilege to do so. It's easy because it's a multiple choice question with only one answer, but more than that, as corny as it sounds, I get to participate in the life of the most amazing human being I've ever met, or will likely ever meet. I get to live with that person every day of my life. Who wouldn't sign on for that? That's not strength. That's selfish opportunity.
When I read about parents like Heather Spohr and Vicki Forman, I get a glimpse of what true strength really is. It takes strength to face the one thing that no parent should ever have to face. It takes strength to go to that funeral, and most of all it takes real strength to get out of bed the next morning, and the morning after that, and all the mornings that follow.
One day, hopefully not terribly soon, Schuyler will have to say goodbye to her poor sad father. If the universe proceeds the way it should, she'll say goodbye, and she'll put on a pretty dress and then she'll put me in a box or an urn and she'll give me back to the earth. It'll be a hard day for her, and I'm genuinely sorry to put her through that, but it'll be a sad page from The Way Things Are Supposed To Be.
To me, as weak as I am, the alternative is unthinkable.
April 25, 2009
Dumb Man Tweeting
Most days of the week, I listen to a program on my local public radio station called Think. It's been one of my favorites since it first aired a few years ago, thanks to the amazing host, Krys Boyd, who interviewed me on the television version of the show last year, in what was ultimately my favorite media appearance. A few days ago, I turned on the show to find that the guests were Jake Heggie, a composer who wrote a celebrated operatic version of Dead Man Walking about ten years ago (which is being performed in Fort Worth next month), and Sister Helen Prejean, the memoirist and activist who wrote about her early experiences as spiritual advisor to death row inmates in Dead Man Walking. Both the opera and the movie are based on her book.
Sister Helen has been one of my heroes, ever since I was in college. Until that time, like a lot of Americans, I hadn't given the reality of the death penalty much thought. I don't think I was even opposed to it when I was young. It seemed clear to me, you know? Someone kills, they deserve to die. Reading Prejean's book and especially seeing the movie, I realized that the issues are much more complicated than that. I eventually became a committed opponent to capital punishment, even attending a few protests and, much later, helping exonerated death row inmate Kerry Max Cook during his book tour. (That experience was sort of a beating, culminating in being rudely shoved out of the way by Robin Williams. At least I got a good story out of it.) Put simply, Sister Helen Prejean was a driving force in opening my eyes to a cause that I have come to believe in deeply. She's one of my personal heroes.
So when I saw, via a feed from the radio station, that Sister Helen was on Twitter and had posted a message about the show, I immediately sent her a tweet. (God, I hate using that word. I feel like I'm turning into Elmo every time I say it.)
I posted a message to my feed, because what is Twitter if not a place to showcase my bonehead moves?
If pressed, however, I'll have to confess to Schuyler that the message said:
I'm swell.
Sister Helen has been one of my heroes, ever since I was in college. Until that time, like a lot of Americans, I hadn't given the reality of the death penalty much thought. I don't think I was even opposed to it when I was young. It seemed clear to me, you know? Someone kills, they deserve to die. Reading Prejean's book and especially seeing the movie, I realized that the issues are much more complicated than that. I eventually became a committed opponent to capital punishment, even attending a few protests and, much later, helping exonerated death row inmate Kerry Max Cook during his book tour. (That experience was sort of a beating, culminating in being rudely shoved out of the way by Robin Williams. At least I got a good story out of it.) Put simply, Sister Helen Prejean was a driving force in opening my eyes to a cause that I have come to believe in deeply. She's one of my personal heroes.
So when I saw, via a feed from the radio station, that Sister Helen was on Twitter and had posted a message about the show, I immediately sent her a tweet. (God, I hate using that word. I feel like I'm turning into Elmo every time I say it.)
- @helenprejean Thought it was wonderful! Also, you're one of my heroes, which feels like a weird thing to say on Twitter, but there it is.
- A farting pug is driving me out of my own apartment. That hardly seems fair. I hope my central nervous system will restart with fresh air.
I posted a message to my feed, because what is Twitter if not a place to showcase my bonehead moves?
- I sent a twitter message to one of my personal heroes, only to realize that my previous tweet mentions dog farts. (This hero? Is a nun.)
If pressed, however, I'll have to confess to Schuyler that the message said:
- Dog farts don't bother me. Well, mentioning them doesn't! Thanks for the tweet.
I'm swell.
April 22, 2009
REVIEW: Houston, We Have a Problema
In the interest of full disclosure, Gwen is a friend of mine. But that wasn't always the case, and by the time we become friends, I already knew she was a good writer.
I'm not much of a critic, certainly. I've written a few reviews for Amazon, but there are two things I won't do where reviews are concerned. I won't write a bad review at all, first of all. I've experienced the fun of reading a review and hoping it won't rip apart my book, and I'd never dream of contributing to another author's anxiety. But I also won't write a good review for a book I don't like.
I've been sitting on this book for a while because I'm a crappy friend when it comes to following through on things like this. Well, what are you going to do?
Houston, We Have a Problema
by Gwendolyn Zepeda
A good read that transcends genre
*****
Gwen Zepeda's novel Houston, We Have a Problema is bound to be pushed into some pretty narrow genre categories -- latina chick lit, perhaps -- which is a pity, because Zepeda has written an engaging and fun work that transcends its regional and cultural environment and is quite simply a well-written and entertaining piece of work.
Jessica Luna is a single twentysomething standing on the edge of change. She finds herself confronting the prospects of changing jobs while at the same time hurtling towards decisions that must be made in her dating life, romantic choices that seem to mirror her career in flux. She jockeys for promotion at an insurance company job that she finds unfulfilling even as she dreams of a career in the art world. At the same time, she teeters between Jonathan, the successful Anglo executive who represents safety but also a step away from her passion and her culture, and the temperamental artist Guillermo, who frustrates her with his unreliability even as he haunts her on a visceral, emotional level. Jessica's superstitious nature leads her to consult Madame Hortensia, a pragmatic fortune teller whose guidance mostly serves to turn her gaze inward. Jessica Luna will find her own answers, if only she can learn to trust her heart.
Houston, We Have a Problema reads like good solid chick lit, but Zepeda delves into topics of race and family dysfunction that give the novel an unexpected depth. It does so, however, with subtlety and humor, and most of all with nuanced, believable characters. This isn't a book I would have naturally gravitated to, mostly because of the genre, but to have missed out on this charming story would have been a real pity. I've been aware of Gwen Zepeda's writing for a while, but with Houston, We Have a Problema, she now has my undivided attention.
I'm not much of a critic, certainly. I've written a few reviews for Amazon, but there are two things I won't do where reviews are concerned. I won't write a bad review at all, first of all. I've experienced the fun of reading a review and hoping it won't rip apart my book, and I'd never dream of contributing to another author's anxiety. But I also won't write a good review for a book I don't like.
I've been sitting on this book for a while because I'm a crappy friend when it comes to following through on things like this. Well, what are you going to do?
Houston, We Have a Problema
by Gwendolyn Zepeda
A good read that transcends genre
*****
Gwen Zepeda's novel Houston, We Have a Problema is bound to be pushed into some pretty narrow genre categories -- latina chick lit, perhaps -- which is a pity, because Zepeda has written an engaging and fun work that transcends its regional and cultural environment and is quite simply a well-written and entertaining piece of work.Jessica Luna is a single twentysomething standing on the edge of change. She finds herself confronting the prospects of changing jobs while at the same time hurtling towards decisions that must be made in her dating life, romantic choices that seem to mirror her career in flux. She jockeys for promotion at an insurance company job that she finds unfulfilling even as she dreams of a career in the art world. At the same time, she teeters between Jonathan, the successful Anglo executive who represents safety but also a step away from her passion and her culture, and the temperamental artist Guillermo, who frustrates her with his unreliability even as he haunts her on a visceral, emotional level. Jessica's superstitious nature leads her to consult Madame Hortensia, a pragmatic fortune teller whose guidance mostly serves to turn her gaze inward. Jessica Luna will find her own answers, if only she can learn to trust her heart.
Houston, We Have a Problema reads like good solid chick lit, but Zepeda delves into topics of race and family dysfunction that give the novel an unexpected depth. It does so, however, with subtlety and humor, and most of all with nuanced, believable characters. This isn't a book I would have naturally gravitated to, mostly because of the genre, but to have missed out on this charming story would have been a real pity. I've been aware of Gwen Zepeda's writing for a while, but with Houston, We Have a Problema, she now has my undivided attention.
April 20, 2009
The Broken Places
Okay, first of all, the important news. Schuyler's solo trip on an airplane? A total success. (Is it mere coincidence that Schuyler recently presented a class report on Amelia Earhart?) Everyone had a great time, my mom got to spend some time with her weird Martian grandchild and get a little better understanding of who she is, and of course Schuyler made new friends on both legs of the trip. Thankfully, the boys she met on the flight back were actually BOYS and not grown men; I must review the concepts of "stranger danger" and "just because your Big Box of Words has (now had) your address and phone numbers programmed into it doesn't mean you should necessarily share that information" with her once again.
All in all, the experiment was a great success, and so I will be ready to put Schuyler on a plane by herself again in another nine years or so. Because seriously, for that hour she was on the plane on Friday, and again on her way back? I aged six months each way. I had no idea that my memory could recall so much of the movie Fearless.
Julie and I spent the weekend in Austin, where, after we got a little business out of the way on Friday, we proceeded to have a swell weekend, just the two of us. It was interesting, visiting parts of Austin such as South Congress Avenue that were sort of new to us, even though we lived there for a year and a half. Interesting, and thought provoking.
What we immediately noticed when we visited all the quirky little shops and restaurants was a near complete absence of children. We saw signs in many of the store windows banning strollers and expressing in a variety of cute ways the idea that if kids WERE to come in the store, they were to behave like small adults at all times.
It wasn't necessarily off-putting; these weren't really kid-friendly stores (even the toy stores were more like places for ironic hipsters to buy clever doodads to put on their desks at work to help mask the whiff of corporate slavery), and even if Schuyler had been with us, we always demand (and sometimes even receive) good behavior from her. I'm all for embracing the fun carefree nature of childhood (surely that's no surprise), but I still believe kids need to learn to socialize properly, which often means taking them out to good restaurants and public places that aren't necessarily adorned with cartoon characters. I don't believe in excluding kids from public places, much to the annoyance of many a childfree kook who has emailed me over the years, but neither do I believe in letting them grow up feral at the expense of the world around them.
But what these stores and their environments did bring home to us was the simple fact that Austin in general is not a terribly child-friendly place. I suppose I'm just asking for hate mail by saying that, but there it is. Austin's a city for young people, that much seems clear, but not so much young people starting families. And again, that's fine, we don't need to take over every American city, covering the land with the scourge of Charles Edward Cheese. But this fact might contain the beginnings of an understanding to why Schuyler's school situation there was such a failure, and why she's found so much success in a town like Plano, where one might expect her differentness to be shunned rather than celebrated.
Now in fairness, Schuyler was not in the Austin schools, but in another local school district in the area. But my impression from speaking to a number of parents and SLPs is that while many of the Austin area schools are trying very hard to improve special education in their programs, they are nevertheless fighting something of an uphill battle. A number of Austin schools have been in danger of losing accreditation or even being shut down after receiving unacceptable ratings, including one, the SAILL Charter School, which was established specifically for the purpose of providing a mainstream education to students with disabilities.
Is there a relationship between a community's approach to families and the quality of its schools? That seems like a pretty logical assumption to make, although it would really just be an assumption on my part. But I do think that educational priorities in this country have been seriously skewed for a long time, and in a state with as checkered of an educational record as Texas, the problem seems especially acute. I addressed it in the original draft of my speech to the Texas Speech Language Hearing Association Convention a few weeks ago, and while I eventually cut part of it out in the interest of time, I sort of wish I hadn't now.
On the surface, it seems like a city as conservative as Plano wouldn't be a very welcoming one for us. Julie and I are both very liberal, and neither of us is religious at all. (I self-identify as an Agnostic, but Julie is a full-blown Atheist. She's hard core.) But the reality of Plano's conservatism isn't so much that people here are largely rich or Republican or Christian, although those points are certainly true enough.
Plano is a town that values family above all else. They have shown it with a financial and philosophical commitment to education, and the result is a public school system that rivals the best private schools in some other communities. Special education in particular has received a strong commitment here, and while there are problems here like anywhere else, I never see the casual disregard for students with disability here that were so familiar to us before. We've never been told that Schuyler couldn't receive a service because the school couldn't afford it. And as the parent of a special needs parent, that is a very powerful statement to be able to make.
When the McCain-voting, Jesus-loving, SUV-driving people of Plano met the lefty, Socialist, godless Rummel-Hudsons, they saw a family that was willing to pull up stakes and move, as often as it took, to provide an educational opportunity for their daughter. When the book came out, they saw a father who cared and hurt and loved for his little girl, and who was committed to advocating for thousands, maybe millions, of kids like her.
And when they met Schuyler, they didn't see the purple hair or her "Punky Brewster meets The Addams Family" clothes, and they didn't recoil at her disability. They saw her as one of their own.
It might be tempting to try to draw some sort of ideological lesson from all this, and I'm sure a few conservatives will try. But it's not about the politics. There are plenty of wealthy, conservative communities that don't take care of their kids, particularly those with disabilities. Highland Park in Dallas is among the richest in the state, for example, but while neurotypical kids can expect to be very well educated and end up in Ivy League schools, its reputation for special education and for kids who don't fit a traditional learning environment are pretty awful. And two of the great AAC success stories I've seen first-hand were in the very liberal San Francisco Bay Area; one was in Oakland, a community with an extremely diverse student population, to put it gently.
What it comes down to is priorities. And those priorities are set by YOU, the members of the community. You set them when you choose just how vigorously to to fund your public schools, where federal laws for students with disabilities provide protections that don't bind private schools. You chose how strongly to commit to the future and how hard you are willing to work to build a world where every kid is given the opportunity to reach their potential, even those who are broken or those who are gifted in ways that defy traditional pedagogy. Those kids often grow up to be adults who are active and contributing members of their societies, rather than wards of the state. That's a good conservative argument right there.
And as parents in particular, we are the ones who set the expectation for a community and for our schools. I've been writing and speaking a great deal over the past year and a half about empowering parents to advocate effectively for their kids. Not just by being squeaky wheels (although sometimes it's the only option available), but also by understanding how the system works and what they can reasonably expect their schools and teachers to accomplish. I've got little patience for teachers and SLPs who are afraid of the technology and the extra work required to help kids like Schuyler, but I don't have much more for parents who won't make the effort to learn about their child's disability and to research and really educate themselves on the possibilities.
I recently read an essay for the AAC Institute, written by longtime AAC advocate Robin Hurd, titled Defining Our Terms: Perspectives on AAC Funding. One paragraph resonated with me, for obvious reasons:
It doesn't just apply to SLPs and teachers, and its certainly not specific to AAC users. Parents of disabled children will always be their best advocates, and they'll always find more success when the community in which they live places a high value on educating their kids in general. I understand why many communities want to couch this issue in terms of money. That's why it's more important now than ever to refuse to do so. Special education is a civil rights issue, nothing less. Our commitment to public education needs to be total or not at all. Can you imagine a school district announcing that while they'd love to provide an equal and appropriate education to students of color or lower income, they just can't afford to do it this year? Can you imagine the public outcry? So why is it any different for kids with a disability?
I'm not trying to disparage Austin. It's a city I love and always have. But I'm gradually getting a better understanding of why we might have been destined to fail there, and why we were also destined to find success in the last place we might have looked. I wish there were more places where broken children could find their way, because there's a real value to the community in having these families amongst them, something beyond treacly inspirational stories about God's little miracles or learning to love Holland. It's a tougher value, but it's one that is real.
Hemingway was right. "The world breaks everyone and afterward many are strong at the broken places."
All in all, the experiment was a great success, and so I will be ready to put Schuyler on a plane by herself again in another nine years or so. Because seriously, for that hour she was on the plane on Friday, and again on her way back? I aged six months each way. I had no idea that my memory could recall so much of the movie Fearless.
Julie and I spent the weekend in Austin, where, after we got a little business out of the way on Friday, we proceeded to have a swell weekend, just the two of us. It was interesting, visiting parts of Austin such as South Congress Avenue that were sort of new to us, even though we lived there for a year and a half. Interesting, and thought provoking.
What we immediately noticed when we visited all the quirky little shops and restaurants was a near complete absence of children. We saw signs in many of the store windows banning strollers and expressing in a variety of cute ways the idea that if kids WERE to come in the store, they were to behave like small adults at all times.
It wasn't necessarily off-putting; these weren't really kid-friendly stores (even the toy stores were more like places for ironic hipsters to buy clever doodads to put on their desks at work to help mask the whiff of corporate slavery), and even if Schuyler had been with us, we always demand (and sometimes even receive) good behavior from her. I'm all for embracing the fun carefree nature of childhood (surely that's no surprise), but I still believe kids need to learn to socialize properly, which often means taking them out to good restaurants and public places that aren't necessarily adorned with cartoon characters. I don't believe in excluding kids from public places, much to the annoyance of many a childfree kook who has emailed me over the years, but neither do I believe in letting them grow up feral at the expense of the world around them.
But what these stores and their environments did bring home to us was the simple fact that Austin in general is not a terribly child-friendly place. I suppose I'm just asking for hate mail by saying that, but there it is. Austin's a city for young people, that much seems clear, but not so much young people starting families. And again, that's fine, we don't need to take over every American city, covering the land with the scourge of Charles Edward Cheese. But this fact might contain the beginnings of an understanding to why Schuyler's school situation there was such a failure, and why she's found so much success in a town like Plano, where one might expect her differentness to be shunned rather than celebrated.
Now in fairness, Schuyler was not in the Austin schools, but in another local school district in the area. But my impression from speaking to a number of parents and SLPs is that while many of the Austin area schools are trying very hard to improve special education in their programs, they are nevertheless fighting something of an uphill battle. A number of Austin schools have been in danger of losing accreditation or even being shut down after receiving unacceptable ratings, including one, the SAILL Charter School, which was established specifically for the purpose of providing a mainstream education to students with disabilities.
Is there a relationship between a community's approach to families and the quality of its schools? That seems like a pretty logical assumption to make, although it would really just be an assumption on my part. But I do think that educational priorities in this country have been seriously skewed for a long time, and in a state with as checkered of an educational record as Texas, the problem seems especially acute. I addressed it in the original draft of my speech to the Texas Speech Language Hearing Association Convention a few weeks ago, and while I eventually cut part of it out in the interest of time, I sort of wish I hadn't now.
The right to an equal education in which every child can communicate and participate at the highest level possible for their abilities is a civil right. If we as a society are going to stand up and say that we believe in a public education for every citizen, we need to make good on that promise, and to put our immense resources and commitment behind that promise. And if we can’t do that, if we can’t educate our people, I’m not sure what’s left to do except sit on the couch, turn on American Idol and wait for the Visigoths to climb over the walls.
I work in the city of Arlington, in the Dallas area, and every day as I drive into the city, I see the looming beast that is the new Cowboys Stadium. I’ve seen it referred to as the Enormodome, although I usually just refer to it as the Death Star. The current cost of that facility is estimated at over one billion – BILLION, with a 'b' – dollars. To assist the Cowboys in paying the construction costs of the stadium, Arlington voters approved tax increases that will provide $325 million in funding. At the same time, about half of the over one thousand school districts in Texas will suffer budget shortfalls this year, including Arlington, which will come up about $15 million short.
We as a society must do better. We simply must.
On the surface, it seems like a city as conservative as Plano wouldn't be a very welcoming one for us. Julie and I are both very liberal, and neither of us is religious at all. (I self-identify as an Agnostic, but Julie is a full-blown Atheist. She's hard core.) But the reality of Plano's conservatism isn't so much that people here are largely rich or Republican or Christian, although those points are certainly true enough.
Plano is a town that values family above all else. They have shown it with a financial and philosophical commitment to education, and the result is a public school system that rivals the best private schools in some other communities. Special education in particular has received a strong commitment here, and while there are problems here like anywhere else, I never see the casual disregard for students with disability here that were so familiar to us before. We've never been told that Schuyler couldn't receive a service because the school couldn't afford it. And as the parent of a special needs parent, that is a very powerful statement to be able to make.
When the McCain-voting, Jesus-loving, SUV-driving people of Plano met the lefty, Socialist, godless Rummel-Hudsons, they saw a family that was willing to pull up stakes and move, as often as it took, to provide an educational opportunity for their daughter. When the book came out, they saw a father who cared and hurt and loved for his little girl, and who was committed to advocating for thousands, maybe millions, of kids like her.
And when they met Schuyler, they didn't see the purple hair or her "Punky Brewster meets The Addams Family" clothes, and they didn't recoil at her disability. They saw her as one of their own.
It might be tempting to try to draw some sort of ideological lesson from all this, and I'm sure a few conservatives will try. But it's not about the politics. There are plenty of wealthy, conservative communities that don't take care of their kids, particularly those with disabilities. Highland Park in Dallas is among the richest in the state, for example, but while neurotypical kids can expect to be very well educated and end up in Ivy League schools, its reputation for special education and for kids who don't fit a traditional learning environment are pretty awful. And two of the great AAC success stories I've seen first-hand were in the very liberal San Francisco Bay Area; one was in Oakland, a community with an extremely diverse student population, to put it gently.
What it comes down to is priorities. And those priorities are set by YOU, the members of the community. You set them when you choose just how vigorously to to fund your public schools, where federal laws for students with disabilities provide protections that don't bind private schools. You chose how strongly to commit to the future and how hard you are willing to work to build a world where every kid is given the opportunity to reach their potential, even those who are broken or those who are gifted in ways that defy traditional pedagogy. Those kids often grow up to be adults who are active and contributing members of their societies, rather than wards of the state. That's a good conservative argument right there.
And as parents in particular, we are the ones who set the expectation for a community and for our schools. I've been writing and speaking a great deal over the past year and a half about empowering parents to advocate effectively for their kids. Not just by being squeaky wheels (although sometimes it's the only option available), but also by understanding how the system works and what they can reasonably expect their schools and teachers to accomplish. I've got little patience for teachers and SLPs who are afraid of the technology and the extra work required to help kids like Schuyler, but I don't have much more for parents who won't make the effort to learn about their child's disability and to research and really educate themselves on the possibilities.
I recently read an essay for the AAC Institute, written by longtime AAC advocate Robin Hurd, titled Defining Our Terms: Perspectives on AAC Funding. One paragraph resonated with me, for obvious reasons:
Several families have gotten their children AAC systems outside of the "normal" process, and are seeing good outcomes for their children who use AAC in spite of the lack of involvement of an SLP. The growing availability of information via the internet makes getting the needed information more and more possible for families. The dirty little secret of AAC is that families are often driving the process. Without the efforts of families, many children who need AAC would not have access to the devices or be taught to use them effectively. While some SLPs are knowledgeable in AAC and are a credit to their profession, too many know nothing about AAC, yet continue to attempt to provide guidance to children and the schools that teach them, to the detriment of the children they are supposed to serve.
It doesn't just apply to SLPs and teachers, and its certainly not specific to AAC users. Parents of disabled children will always be their best advocates, and they'll always find more success when the community in which they live places a high value on educating their kids in general. I understand why many communities want to couch this issue in terms of money. That's why it's more important now than ever to refuse to do so. Special education is a civil rights issue, nothing less. Our commitment to public education needs to be total or not at all. Can you imagine a school district announcing that while they'd love to provide an equal and appropriate education to students of color or lower income, they just can't afford to do it this year? Can you imagine the public outcry? So why is it any different for kids with a disability?
I'm not trying to disparage Austin. It's a city I love and always have. But I'm gradually getting a better understanding of why we might have been destined to fail there, and why we were also destined to find success in the last place we might have looked. I wish there were more places where broken children could find their way, because there's a real value to the community in having these families amongst them, something beyond treacly inspirational stories about God's little miracles or learning to love Holland. It's a tougher value, but it's one that is real.
Hemingway was right. "The world breaks everyone and afterward many are strong at the broken places."
April 16, 2009
Separation Anxiety
Tomorrow morning, we are going to take Schuyler to the airport, put her on an airplane and send her to spend the weekend with my mother in Odessa. She'll be flying by herself.
No, my blog didn't get hacked. This is really me.
It all started with an out of town meeting that Julie and I had scheduled, one that Schuyler would find crazy long and boring. We began by looking for someone to watch her for that meeting. It wasn't long, however, before we started talking about the forbidden topic, maybe not to all parents but certainly to those of kids with disabilities.
Taking the whole weekend away. Just the two of us. No Schuyler.
It would be the first time we've done that for more than a few hours, in the nine years since Schuyler was born.
The thing is, that's been in part because we didn't have very many options for watching her, but truth be told, we didn't really look very hard until now, either. Even now, when I think about it, all the old whispers return. What if something happens and you're not there?
What that mysterious "something" might be is unclear. She's not had any seizures that we're aware of, and she self-regulates her diet pretty well. The one scary choking incident she's had in the past six months was 100% entirely my fault, in fact, and it couldn't have come at a worse time, in front of my whole family. I think it put the fear of the "something" in them, too. My mom is a little nervous, but after we talked about it, she was game to give it a go. I'm really happy that she's going to get a chance to know Schuyler a little better; if something ever happened to Julie and me, she's the one I'd want to take care of Schuyler. I can't imagine it would be any harder than raising the nasty little shit of a son that was me.
Putting Schuyler on a plane shouldn't bother me as much as it does. The procedure is pretty much the same as when dangerous prisoners are transported, I suspect. I will walk Schuyler all the way to the gate, where she will meet the flight attendant who will be charged with taking care of her. The flight attendant will walk her onto the plane while I stand and cry like a little girl, and I will be required to stay until the plane actually leaves the ground. (As if I wouldn't be there anyway, my face squooshed up against the glass.) The flight must be direct, with no connections, and the retrieving party must be waiting at the gate when she arrives. Schuyler will be handled with as much attention and care as Hannibal Lecter, although I suspect she'll bring better snacks.
When we originally bounced this idea off of Schuyler, we watched her very carefully to see if she reacted with any kind of hesitation or fear. We should have known better. She expressed instant excitement about the idea and has been asking about it for weeks. Her only concession to even the slightest indication of nervousness was her insistence that Jasper accompany her on the flight. Jasper always flies with Schuyler.
The day we told her about the possible trip, she went to her little chalkboard easel and drew three faces. She'd drawn them often enough that I knew who they were. The face in the middle was smiling, while the other two had tears running down their faces.
She indicated that the one in the middle was her, happy because she was going to see Granny. And the other two? Julie and me, of course, crying because we were sad at her departure.
"Waaah!" she said, pointing at us and laughing.
The next morning, she'd replaced our portraits with a drawing of an airplane.
That's cold, Schuyler. Very, very cold.
No, my blog didn't get hacked. This is really me.
It all started with an out of town meeting that Julie and I had scheduled, one that Schuyler would find crazy long and boring. We began by looking for someone to watch her for that meeting. It wasn't long, however, before we started talking about the forbidden topic, maybe not to all parents but certainly to those of kids with disabilities.
Taking the whole weekend away. Just the two of us. No Schuyler.
It would be the first time we've done that for more than a few hours, in the nine years since Schuyler was born.
The thing is, that's been in part because we didn't have very many options for watching her, but truth be told, we didn't really look very hard until now, either. Even now, when I think about it, all the old whispers return. What if something happens and you're not there?
What that mysterious "something" might be is unclear. She's not had any seizures that we're aware of, and she self-regulates her diet pretty well. The one scary choking incident she's had in the past six months was 100% entirely my fault, in fact, and it couldn't have come at a worse time, in front of my whole family. I think it put the fear of the "something" in them, too. My mom is a little nervous, but after we talked about it, she was game to give it a go. I'm really happy that she's going to get a chance to know Schuyler a little better; if something ever happened to Julie and me, she's the one I'd want to take care of Schuyler. I can't imagine it would be any harder than raising the nasty little shit of a son that was me.
Putting Schuyler on a plane shouldn't bother me as much as it does. The procedure is pretty much the same as when dangerous prisoners are transported, I suspect. I will walk Schuyler all the way to the gate, where she will meet the flight attendant who will be charged with taking care of her. The flight attendant will walk her onto the plane while I stand and cry like a little girl, and I will be required to stay until the plane actually leaves the ground. (As if I wouldn't be there anyway, my face squooshed up against the glass.) The flight must be direct, with no connections, and the retrieving party must be waiting at the gate when she arrives. Schuyler will be handled with as much attention and care as Hannibal Lecter, although I suspect she'll bring better snacks.
When we originally bounced this idea off of Schuyler, we watched her very carefully to see if she reacted with any kind of hesitation or fear. We should have known better. She expressed instant excitement about the idea and has been asking about it for weeks. Her only concession to even the slightest indication of nervousness was her insistence that Jasper accompany her on the flight. Jasper always flies with Schuyler.
The day we told her about the possible trip, she went to her little chalkboard easel and drew three faces. She'd drawn them often enough that I knew who they were. The face in the middle was smiling, while the other two had tears running down their faces.
She indicated that the one in the middle was her, happy because she was going to see Granny. And the other two? Julie and me, of course, crying because we were sad at her departure.
"Waaah!" she said, pointing at us and laughing.
The next morning, she'd replaced our portraits with a drawing of an airplane.
That's cold, Schuyler. Very, very cold.
April 10, 2009
"Faculty"? Yeah, that should annoy a few people...
Celebration of Faculty Creative Works from 2007-2008
The Office of the Provost and the UT Arlington Library announce the first annual exhibit to highlight recent books, art exhibit catalogs, music recordings and patents of the UT Arlington faculty and staff. Provost Donald R. Bobbitt and Dean of the Library Gerald Saxon will toast all exhibition participants at a reception honoring these individuals.
The depth and breadth of scholarship and creativity at UT Arlington is a great source of pride on campus and beyond. The exhibit will open with a faculty and staff reception on Tuesday, April 14, from 5 – 6:30pm in the sixth floor atrium of Central Library.
For several years the library has sponsored an annual lecture series called "Focus on Faculty," featuring a half-dozen talks a year by award-winning faculty. This exhibit takes it to the next level and features more than 80 entries, recognizing works completed in the 2007-2008 academic year.
A booklet cataloging each entry will be available, and the exhibit will remain in place through May 31, 2009. The exhibit is free and open to the public. Hours of the Central Library sixth floor atrium are Monday, 8am to 7pm and Tuesday through Saturday, 8am to 5pm.
(Of all the recognition I've received for the book, the ones at my old university mean the most to me, no doubt because of my less-than-stellar performance as a student. That's right, kids. Stay in school. It's more fun than actual work.)
April 8, 2009
The silent partner speaks
Those of you who are always saying "More Julie, more Julie!" will be happy to know that she shot video on our trip to Austin, and you can see some of it here, along with the short radio piece that ran on KUT 90.5 Public Radio in Austin.
Don't look for anything capital-I Important here. It's just for fun. (I may post another one soon of the next day, at our signing at BookPeople. So there's something to live for if you're feeling sad.)
Don't look for anything capital-I Important here. It's just for fun. (I may post another one soon of the next day, at our signing at BookPeople. So there's something to live for if you're feeling sad.)
April 6, 2009
TSHA Convention 2009
(Photo by Shannon Sakmary-Best)
So yes, it turns out that 2500 people is, well, a lot of people.
I got a sense of that fact when we went to the sound check the day before the Keynote Session of the 2009 Texas Speech Language Hearing Association Convention. We were looking for Ballroom D, but when we peeked in the door to Ballroom G, we saw that I would in fact be speaking in Ballroom All-Of-Them. The partitioning walls had been retracted and the entire room was open. Three giant screens loomed over the stage, two of which would display my slide presentation (mostly photos of Schuyler, because I'm no dummy) and one which would show my head all giant-sized as I spoke. When we showed up the next morning, the room was full and some people had even been turned away. It feels surreal even to say that, but there it is.
I'm happy to report that the speech went well, I believe. I got a great deal of positive feedback from people afterwards, and no one booed or threw any of their breakfast tacos at me. The book signing sessions immediately following were crowded and friendly, with Schuyler signing in pink and generally charming everyone. (Again, I'm no dummy; I understood who people were there to meet.) I spoke to a local public radio reporter without sounding too idiotic, and we even visited the state capitol building to meet the governor (who was a no-show, sadly; I wanted to see Schuyler give Rick Perry one of her tackle-hugs) and other representatives about some upcoming bills that are of great interest to speech language pathologists and their patients.
Everywhere we went for the next two days, people would come up to us and say that they cried or were inspired by the speech, and I can't even begin to tell you how much that means to me. It's a powerful thing for me to hear because the fact is that we're not that different from any other parents out there who have fought and will continue to fight for our disabled kids. If we're different at all, it's because 1) the book has given us a voice where so many parents have none, and 2) Schuyler's story has a very rare happy ending, or at least a happy beginning. As a result, the idea that I could represent other parents is a humbling one, and one that I take very seriously.
The Texas Speech Language Hearing Association is made up primarily of SLPs (speech language pathologists, if you're not into the whole brevity thing). They represent one leg of the crucial balance for kids with disabilities who attend public schools, with teachers and parents making up the other supports. It's a wobbly tripod under the best of circumstances. I acknowledged in my speech that the two biggest obstacles for SLPs as they attempt to implement therapies and technologies are teachers and parents.
Teachers are overwhelmed by their class loads and by the labyrinthine system put in place by school boards and state-mandated testing and No Child Left Behind, and can be resistant to new technologies and therapeutic approaches. Much of the time they're just getting used to the last Big New Thing that came at them. And parents often feel overmatched by the capital-E Experts they face when they go in for their kid's IEP meeting. Until they take up the fight, educate themselves and become empowered, special needs parents serve as a kind of wind drag on the process, which is unfortunate and even frustrating, because we should be leading the fight, not following hesitantly behind.
Part of why I wanted to deliver this speech was to make the case that when empowered, special needs parents become a powerful force for change and progress. "No one is a quicker study," I said, "than the special needs parent." Julie and I couldn't help Schuyler much; we weren't qualified or trained to do so in a meaningful way. But without our persistence and our self-education and our willingness to be a pain in the ass when it was necessary, Schuyler wouldn't have been helped. She wouldn't have had the opportunity to become who she is today, and who she's going to be tomorrow, or in ten years.
And that's not because we're such swell parents and should be lauded for our efforts. It's because that's our job. And if you're a parent of a special needs kid? It's your job, too. If your kid gets into the finest program in the country, or if they end up in some awful place where they get parked in the corner and are simply fed and watered like a plant until they turn seventeen, the fact remains that eventually, they won't be anyone's responsibility but your own.
And when the school can look up at your kid, shrug and say "Not my problem", you as a parent had better not be standing there thinking that it's time for you to get involved. Because by then, it'll be too late. You will have squandered your opportunity to save your child, and you will get to take over the feeding and watering and regretting the wasted years.
-----
To the SLPs represented at the TSHA conference, I said this:
What does the future hold for kids like Schuyler? I wish I knew. There are so many kids out there like Schuyler, so many stories, many of them sad and most of them overwhelming, and yet the one thing that I truly believe these kids have in common is that none of their future stories is written. I watched Schuyler defy the expectations of her earliest teachers and doctors, and I've learned to trust in our ability to be a pain in the ass on her behalf. Her support in Plano has been so solid and so consistent that there are times when I forget, for just a moment, how many times she could have been left behind, in general special education classes where she wasn't taught so much as cared for. I forget the devil of low expectations so often assigned to her, and how hard we had to fight to throw those expectations off. If Schuyler has flown as high as she has despite the limitations that were consistently placed on her, can you imagine how far she and all her fellow students might go if, from the very beginning, they could be given an environment that focused not on what they can't do, but on what might be possible? Can you imagine that world where parent/teacher meetings didn't consist of "Here's why we can't try that" but instead simply "Why not?"
As parents of broken kids yearning for repair or compensatory development, we go into battle against our children's monsters clutching whatever weapons we can find. Rubber swords if necessary, nothing but our hands if need be. If we seem desperate at times, it's because we are, we are absolutely desperate, and you'll find that most of us will do whatever it takes to defeat those monsters, or to muzzle them, tame them, to put them on leashes and just manage them. We just don't want to do it alone. We need you. As educators and SLPs, voters and taxpayers, as fellow citizens of the world and children of God, you can be our heroes. We're desperate for heroes most of all. All of you can be the ones who step up beside us and say "Here's a real sword, let's take care of this."
-----
It was an honor and a privilege to speak to so many people, particularly ones who work so hard to help Schuyler and her friends. I would also humbly suggest that it is THEIR honor and privilege, as it is mine, to work with kids like Schuyler. The work is hard. The rewards are immeasurable, and go all the way down to the soul.
Before the speech
The line at the book signing
Signing books with Schuyler and her pink pen
Schuyler signing the governor's guest registry
Schuyler with PRC's Tracy Custer
(Photo by Shannon Sakmary-Best)
April 1, 2009
The Big Room
Okay, so here's where I'm be speaking in the morning, as seen from the back of the room.The room is so big that the screen behind me will display my big fat head, just so the people in the back can say "Wow, he's not so easy on the eyes, is he?"
(Click on the photo so you can see it in detail. That's Schuyler and me, goofing around at the podium while everyone else is trying to work.)
I'm not paralyzed with anxiety or anything, but yeah, this gargantuan room is a little daunting. I keep thinking of the giant underground hall in Lord of the Rings, as if that giant fire monster is going to show up halfway through and start trashing the place.
I'm not paralyzed with anxiety or anything, but yeah, this gargantuan room is a little daunting. I keep thinking of the giant underground hall in Lord of the Rings, as if that giant fire monster is going to show up halfway through and start trashing the place.
I'm looking forward to speaking in it, though. Well, perhaps after I read through my speech again, just one more time.
See you on the other side...
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