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Portia Iverson (CAN)
"TITLE:
What's Working for Tito and Others to Communicate -- Portia Iverson
(CAN)."
Tuesday, February 11th
at 7 p.m. (Eastern), Note portions of the text have been edited for
spelling and grammatical errors, while other text with errors was left in
tact in the context of the chat.
Rebecca {public msg} Hello and Welcome to our talkAutism Specialty
Chat. If you have a question for our Host Speaker's, "What's Working for
Tito and Others to Communicate -- Portia Iverson (CAN)." Just type a "?"
in the room. The names will be taken in order received. Hold your
questions until you are cued by the Moderator. Also, Please keep chit chat
down to a minimal. Feel free to speak up when The Host addresses your
question, and say, "Thanks" when you are satisfied so that Moderator knows
to move on to the next person. Thank You and enjoy your stay!
Ron {public msg} thanks for doing this tonight, Portia!
Ron {public msg} schools (sawtelle down here ) was really receptive
to the co-fundraising approach - brilliant.
Tristatecan {public msg} Many schools really stepping up.
Bytress {public msg} Portia, I am glad for your persistence and
dedication.
Rebecca {action: Portia} applauds Portia fervently.
Ron {public msg} same here!
Rebecca {public msg} Portia would you like to begin with a brief
promo or bio.
Mommyo {public msg} ?
Abhoyjit {public msg} ?
Pteri {public msg} ?
Sunnie {public msg} "?"
Rebecca {public msg} Sure Portia.
Ron {public msg} how about what you been doing with rpm, and tito.
Bytress {public msg} ?
Portia {public msg} Okay, my husband Jon and I started Cure Autism
Now 7 years ago when our son Dov was Dxed w autism and we saw little
research was going on. I met Soma and Tito about 2 yrs ago at a CAN
conference promoting innovative technology for autism.
Moderator {public msg} Portia ready for questions now?
Portia {public msg} Okay re RPM and Tito - I heard about Tito at a
conference about 3 years ago. I heard that he was an 11 yr old boy w
severe autism and from his behavior he appeared retarded, however, he was
intact cognitively and I immediately thought we could learn so.
Portia {public msg} ....so much about autism from him. He visited
neuroscientists around the country and it lead to a lot of very
interesting research which is starting to uncover some of the underlying
causes of autistic behaviors.
Portia {public msg} I can take questions any time. ---
Moderator {public msg} Mommyo you have a question.
Mommyo {public msg} Do Tito & Dov. get confused with receptive
language? Especially if it is spoken so fast? How do you know if they are
understanding everything?
Portia {public msg} they have excellent receptive language - above
average - but unless they could type, you would not be able to know that.
Smittyjwac {public msg} ?
Mommyo {public msg} My son gets confused with verbal language.
Mommyo {public msg} But I believe he understands almost everything.
Portia {public msg} I/We only know they understand if they have a
means to show it. -
Mommyo {public msg} My son types well, but still can not answer
questions that I ask him.
Mommyo {public msg} Do you have a suggestion to help us.
Portia {public msg} What does he type?
Mommyo {public msg} He loves to spell anything about Thomas the
tank engine.
Mommyo {public msg} And even does internet searches.
Portia {public msg} Does he also talk, and if so does he talk about
T the train?
Onegary {public msg} ?
Mommyo {public msg} He does talk but not well.
Mommyo {public msg} He can put a sentence together.
Mommyo {public msg} but allot of it gets jumbled.
Portia {public msg} I am not sure, I have not seen a kid do verbal
stims with typing, but I am sure it happens, if you'd like I will ask Soma
what she thinks and e-mail you later.
Mommyo {public msg} Thanks I would love it.
Mommyo {public msg} Thanks again.
Moderator {public msg} Abhoyjit you are next.
Abhoyjit {public msg} Hi Portia.... good to talk with you again.
(1) You'd indicated that a "manual" would be written sometime shortly;
could you give us an update? (2) Any thoughts on kids who are already
somewhat (but not completely) verbal or can communicate some other means
already, e.g., write/type?
Portia {public msg} You are welcome, just send me your address
later.
Mommyo {public msg} Ok
elizabeth5 {enters}
Portia {public msg} Hi Abhoyjit, Soma and I have been working on a
manual for RPM. We are getting input from education and psychology experts
as we go, and we hope to have a "beta test" version on the web by June
first for people to try and to give us feed back before public.
Ron {public msg} ?
Portia {public msg} ...Before publication.
Abhoyjit {public msg} Sign me up... anything to add to (2) that you
haven't already mentioned in the discussion with.
Mommyo{public msg}?
Tristatecan {public msg} "?"
Portia {public msg} As far as verbal VS nonverbal kids, I recently
saw Soma work w a verbal teenager whose verbal stimming (talks about
Disney movies nonstop) gets in the way of his intentional communication.
Portia {public msg} He was very anxious at first but was able to
use the letter board to communicate his thoughts (rather than verbal
stimming) successfully. So, yes, I think it can help verbal kids too.
Moderator {public msg} Pteri you have a question.
Abhoyjit {public msg} Ok thanks
Pteri {public msg} Hi Portia, How is rapid prompt method similar
and different from intensive behavioral intervention?
Kristy {public msg} ?
Portia {public msg} There are similarities - ABA can be a form of
rapid prompting, refocusing the child moment to moment, but often the
prompting is not as rapid.
Portia {public msg} Is that a speech and language term?
Pteri{public msg} Let's just say it's more like what you would see
in a direct instruction program "to become fluent" in the task at hand.
Pteri {public msg} It's very rapid prompting with lots of
reinforcement. Basically ABA based.
Portia {public msg} I can't say as I am not familiar.
Pteri {public msg} That's ok. Thank you so much.
Moderator {public msg} Sunnie you have a question.
Sunnie {public msg} Are either or Tito on medication? If so, how
does this affect their speech?
Portia {public msg} RPM does not use 're-enforcers'. Soma finds
that the kids are reinforced by being recognized for what they know, more
than anything.
Sunnie {public msg} Have either of them ever had any problems with
aggression?
Portia {public msg} Okay re medication, tito is on Depekote which
helps with his big mood swings and aggression, also resperidol (sp?).
Portia {public msg} Dov has been on Depakote for many years and it
helps stabilize his moods.
Sunnie {public msg} Depakote is an anti-seizure med., right?
Portia {public msg} Yes, both boys have problems with aggression.
RPM is not a cure for autism (unfortunately). However, it is great for the
autistic person to be able to communicate.
Sunnie {public msg} How do you feel about the use of sign language
for a younger child?
Portia {public msg} If someone had asked me 2 years ago, whether my
son would still be autistic if he was cognitively intact and could
communicate - i would have said no, he would not be autistic if that were
true.
Charfc {public msg} Oh, I am so glad to be here!!!
Sunnie {public msg} Are you familiar with Gail Gillingham?
Portia {public msg} But - clearly he still is very autistic.
Aggression and frustration went down extensively, But his behavioral
repertoire is still made up 99% of uninhibited impulses which he cannot
control. tito is the same.
Abhoyjit {action} . o O ( ? )
Sunnie {public msg} "Thanks"
Charfc {public msg} ?
Portia {public msg} Yes I know Gail, and I admire her work.
Moderator {public msg} I8dpie has the next question.
Sunnie {public msg} She says no autistic person she has ever
encountered is retarded, btw.
Sunnie {public msg} Sorry..
Portia {public msg} I think Soma would agree with that statement.
Sunnie {public msg} Thank you very much!
Portia {public msg} Sunnie: re sign language - anything that
helps...
I8dpie {public msg} If a child (age 9) has done very poorly in
discrete trial type programs, could RPM still benefit this child?
Portia {public msg} We think there are two major subgroups:
auditory adaptors and visual adaptors. Sensory overload is described by
all autistics who i can communicate as the hallmark of their early life.
Portia {public msg} And so it seems that the Titos stopped looking
and relied primarily on hearing to try to make sense of this overloaded
work, while the Temples used their vision and auditory processing went by
the way side.
Portia {public msg} Counter intuitively, Tito has excellent
"language", but cannot speak and has very poor motor ability. While temple
can talk and has poor auditory processing yet better motor skills.
Portia {public msg} We studied them at UCSF side by side and the
two types played out. A paper will be published. Using pictures with an
'auditory' type of kid won't help.
Tbaaernst {public msg} How do you know which way to go?
Portia {public msg} Also, keep in mind that written words are
actually processed auditory as opposed to being visual.
qim {public msg} ?
Portia {public msg} You can get a clue, if your child loves TV and
video they may be visual dominant. if they seem not to pay attention to
anything visually but rely more on tactile ie put stuff in their mouth,
feel surfaces, etc - they may be auditory learners.
Portia {public msg} Soma has been studying the tactile and
kinesthetic components and we hope to be able to present a matrix for
parents to use to help determine their child's learning style.
Sunnie {public msg} "?"
Moderator {public msg} Smitty you have the next question.
Smittyjwac {public msg} There are various Computer aid programs for
autistics people, however, not everyone program is suitable for each
individual. I'm curious as to what assessment you prefer to
implement--PEP-R, or LPAD--to test for their appropriate tech-aid?
Furthermore, I read in an article that some tech-aid are personally
written individuals. Is the process expensive and time consuming?
Portia {public msg} This will be so important to get the best
educational approaches to these kids and help them succeed. i think most
auditory learners like Tito and Dona re written off as retarded when they
don't talk by age 3 or 4.
Portia {public msg} The technology currently available is poor -
not flexible and expensive.
Moderator {public msg} Onegary has the next question.
Onegary {public msg} My son is able to ask for anything he wants,
sings songs and will repeat, but we can't develop any conversational
speech- what is the next step- and what is the difference between PRM and
VB
bunky {public msg} Hi--Jeff Sell here--I'm just signing in for my
wife Paula--she'll be here in 5 seconds!!
Smittyjwac {public msg} Thanks you.
Portia {public msg} CAN has commissioned a group at Stanford (AARTI)
to use available 'Palm' type technology to develop a tablet that is tough
and can be adapted in many ways to fit the child's needs - in other words
to fit their sensory dominant mode.
Portia {public msg} What is VB?
Onegary {public msg} Verbal behavior.
Onegary {public msg} Dr. Vince Carbone is large supporter of same
Portia {public msg} Can't answer as I am not familiar with
implications of VB. As far as conversation, we have developed some
strategies for nonverbal kids to have peer interaction - could probably be
adapted for verbal kids too.
Moderator {public msg} Ron has the next question
Ron {public msg} Hi Portia- thanks for doing the chat. this is
great. Any ideas on how we can get RPM trialed in NJ schools by this
coming September?
Portia {public msg} Please send me Carbone's papers if you have
them, I'd like to know more.
Ron {public msg} Carbone's presentation is on TalkAutism's Virtual
Speaker.
Onegary {public msg} I will get them out to you, I heard it is very
similar program.
Macko {public msg} ?
Portia {public msg} No, but maybe you and some others can help
strategize. We are working on the manual as a foundation, and then will
develop workshops to teach teachers, aides and parents. Soma is doing an
in training for a week at a school up north and we'll learn a lot .
Ron {public msg} can we part of that training to bring techniques
back to NJ?
Moderator {public msg} Kristy has the next question
Kristy {public msg} Hi. My son is 5 & nonverbal. How do I start RMP?
How could you tell that Dov was ready?
Portia {public msg} I just want to say thanks to all the parents
for your ongoing support of CAN - we couldn't keep it up without all of
you.
Pteri {public msg} ?
Portia {public msg} I did not know Dov was ready at all. It was a
shock to discover he could read and that he was near age appropriate
academically. He went from pre-K to 4th grade curriculum in one school
year, on his IEP goals.
Kristy {public msg} My son ignores us when we try to get him to
read with us.
Tbaaernst {public msg} You must have had some signs to tell you
though Portia?
Portia {public msg} Start any kid at any age - assume they have
been learning all along and are quite intelligent. Start with simple 2
choices, like yes and no, keep moving your stimuli fast and keep talking -
it doesn't matter what you say, just keep alerting the system rep.
Charfc {public msg} Can you talk a little about the use of
facilitation to get both Tito and Dov started with their communication?
(And I totally agree that no one I have met who has autism is retarded). I
love what you said about the inability to do intentional behaviors.
Kristy {public msg} Thanks Portia!
Portia {public msg} ...Repeatedly. C'mon, good, go, go...etc. Give
the child a prod on the shoulder or arm to alert the body sense and motor
system. it is very labor intensive!
Rebecca {public msg} Thanks so much for your time Portia!! AND all
you do in support of Autism!!!
Moderator {action} . o O ( I am so sorry for all those that we did
not get to. This room is open 24/7 please feel free to stay and discuss
anything you would all like. )
Ron {public msg} We'd love to have you on again Portia. Thanks so
much for what you and CAN do for the autism community.
Portia {public msg} That is a complicated question - first I would
concentrate on getting her to communicate what she really means using the
skills she has already - branch out to auditory after that.
Mommyo {public msg} Thank you so much Portia!!! I can't wait for
the manual!
Tristatecan {public msg} Remember " A Knight To Fight Autism" March
23 at Medieval Times in NJ 877-879-2873 for info or check the CAN web site
under NJ Chapter.
Rebecca {action} We Welcome you to come back again Portia...
Mommyo {public msg} Please do come back Portia!
Bytress {public msg} Cheers! Thanks.
Qim {public msg} Thanks Portia and Dov for the work you are doing.
I got here late, did Portia say anything to this question..."What's the
difference between RPM and FC?"
Sunnie {public msg} Thank you, Portia.
Ron {public msg} Thank you Moderator and Rebecca. Great job.
Everybody tell your friends who couldn't make it that the transcript for
this will be posted in about two weeks.
Portia {public msg} Thank to all of you, hang in there. the science
is looking better and better - I hope we can celebrate with some
breakthroughs in the next year or two. Best wishers to all of you. Thanks
again for your support of CAN.
Moderator {public msg} A transcript will be available of this chat
Pteri {public msg} Anyone know who I can call to set up an
appointment to visit a classroom with this set up? Willing to travel..
Charfc {public msg} Sunnie, I have had some success with visual
kids using FC to type conversationally at the computer.
Rebecca {public msg} Portia's transcript will be posted very soon!!
Moderator {action} . o O ( please stay and help each other with any
questions and answers, most of us do know more about our kids then anyone,
and are the best source of support. )
Portia {public msg} I am signing off - have to put my kids to bed.
Thanks and best wishes to you all. -Portia
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