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.
I asked some of the amazing people I've met at the Prentke Romich Company if they could point me to studies actually illustrating that AAC use contributes to overall language and/or speech development, not just providing a voice but actually aiding in the development of other communication methods, including verbal. I should have known they would come through. One of the things I love about PRC is that the people who represent them in the field aren't sales representatives. They are SLPs and therapists, they are the same people who fight our monsters and they do so with real weapons, the ones they believe in.
And when it comes to AAC and its implementation, they know their stuff.
Anyway, here are some direct quotes from the book Exemplary Practices for Beginning Communicators: Implications for AAC by Joe Reichle, David Beukelman, and Janice Light. I'll have more to share soon.
(There are also some further resources listed at the end, so you can... Read More About It!)
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1.) "Although some existing research literature and recommended practices data support the notions that even very young children and other beginning communicators can use and benefit from AAC (e.g., Pierce, 1999; Romski & Sevcik, 1996), some professionals still believe that AAC is a last resort to be tried only after all other interventions have failed and the individual is still not talking (Romski, Sevcik, & Forrest, 2001). This belief may contribute to why AAC is often not incorporated into prelinguistic intervention strategies. Typically developing children primarily rely on gestures to communicate until about 12-13 months of age, when they increasingly use speech for communication (Goldin-Meadow, 2000). Using a developmental perspective, AAC interventions (e.g., gestures, devices, switches) can be viewed as tools to develop prelinguistic skills and set the stage for later vocabulary development regardless of whether the individual eventually talks."
2.) "Previously, it was assumed that individuals need to demonstrate the prerequisites of sensorimotor stage V for sufficient symbolic understanding to begin to learn how to use AAC (e.g., Chapman & Miller, 1980; Owens & House, 1984). It was later recognized that individuals can acquire some of the presumed prerequisite skills much earlier through the functional use of AAC in naturalistic environments (Kangas & Lloyd, 1988; Reichle & Karlan, 1985)."
(Quote specific to speech output devices:)
3.) "Romski and Sevcik (1996) argued that the use of a speech-output communication device was a critical component of their participants' successful use of SAL (System for Augmenting Language). They contended that the speech output provided a link to the natural auditory world for participants. Yet, no direct comparison of SAL acquisition (speech+symbols) with learning symbols alone was provided. Schlosser, Belfiore, Nigam, and Blischak (1995) conducted a study on three individuals with severe mental retardation who would have been considered beginning communicators. The researchers compared the participants' acquisition of visual graphic symbols and speech output with the acquisition of visual graphic symbols alone. They found that the speech output + visual graphic symbols resulted in more efficient learning with fewer errors than the visual graphic symbols alone. These results support Romski and Sevcik's argument that speech output can play a critical role in AAC language learning."
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Pierce, P. (1999). Baby Power: A guide for families using assistive technology with their infants and toddlers. Chapel Hill: The University of North Carolina Press.
Romski, M.A. & Sevcik, R.A. (1996). Breaking the speech barrier: Language development through augmented means. Baltimore: Paul H. Brookes Publishing Co.
Romski, M.A., Sevcik, R.A., & Forrest, S. (2001). Augmentative and alternative communication in inclusive early childhood programs. In M.J. Guarlnick (Ed.), Early childhood inclusion: focus on change (pp. 465-479). Baltimore: Paul H. Brookes Publishing Co.
Goldin-Meadow, S. (2000). Beyond words: The importance of gesture to researchers and learners. Child Development, 71, 231-239.
Kangas, K.A. & Lloyd, L.L. (1988). Early cognitive skills as prerequisites to augmentative and alternative communication use: What are we waiting for? Augmentative and Alternative Communication, 4, 211-221.
Reichle, J. & Karlan, G. (1985). The selection of an augmentative system in communication intervention: A critique of decision rules. Journal of the Association for Persons with Severe Handicaps, 10, 146-156.
Schlosser, R., Belfiore, M.A., Adamson, L.B. (1995). The effects of speech output technology in the learning of graphic symbols. Journal of Applied Behavioral Analysis, 28, 537-549.
I got a response back from Dr. Leaf, which he gave permission for me to print. He followed up this response with another, expressing his displeasure that I posted my own letter before he had a chance to respond, thus opening himself up to criticism from all of you and further confusing the issues without having a chance to respond. He's got a point, actually. (Honestly, I didn't really expect a reply; I figured my email had enough of a "random kook" vibe to go straight to the delete folder.) My sincere apologies, Dr. Leaf.
I have to say, in all honesty, that I'm not sure that I agree with him that his quote was taken entirely out of context. In reading his response, however, it strikes me that the wording in USA Today ("If we could get children to talk without using technology, that would be our preference.") is a pretty indelicate distillation of what he says here, and I do agree that it doesn't represent his position very clearly.
Most of all, I appreciate that he took the time to respond, and I'm happy to pass that response on to you.
And yes, I do expect the rest of you to address me as Dr. Rob from now on. I mean it. I didn't not go to medical school so you could call me Mister.
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Dear Dr. Rummel-Hudson,
I appreciate the opportunity to respond to your concerns. All too often people are not given a chance to respond and even sometimes create controversy perhaps when there is none.
Unfortunately, my quote was taken out of context. As I told the reporter, I believe augmentative devices are very useful. It is the reason why I often recommend schools and parents utilize any devise that will give their children the opportunity to communicate their desires and equally important connect socially with their parents, brothers and sisters and friends.
However, it would be parents’ and professionals’ dream for their children to be able to communicate without augmentative devices, just as we would prefer for children to be able to be successful in school without needing an aide. Or we would prefer that a child would not need medication to control their behavior. But when this is not possible or if it is a lengthy process then anything that will help our children is a godsend!
I am concerned that in the world of Autism the expectations are woefully low and too often people settle for a prosthesis when a child could actually learn the skill. In our clinic we find among preschool age children about half of them already have functional speech even before treatment and this is consistent with what the research literature shows. The research also shows that of those remaining 50% who are nonverbal, the vast majority of them can develop meaningful speech with intensive early intervention and will not require AAC devices (or PECS, or sign language, etc.) either as a means or alternative to vocal speech. This has been our clinical experience as well. I encounter so many families who have been told to simply accept their child’s handicap and are discouraged from seeking treatment that could make an enormous difference in children’s lives. It’s amazing to see how excited people become over a new device and fail to recognize that the it might not be necessary.
We think children deserve to have the highest level of independence possible. If that turns out to be best achieved through use of state-of-the-art AAC, I am thrilled. But if a child could be talking and is not given the opportunity to access state-of-the-art education and treatment, I am greatly saddened.
Nothing I have said should detract from the joy of parents and accomplishments of children who really do need alternate modes of communication.
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.
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.
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.)
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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)
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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.
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.
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.
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.
