"Now I can communicate, people see me as a different person.
I can say things to people and they know I am smart." Reese (10 yrs old)
If you're the parent of a child with autism, I don't need to tell you that finding a good tutor for your son or
daughter is a difficult task. You search for someone who will respect and be kind to your child; someone who will
tune in to your child and be an effective teacher; someone who will stay the course and commit to the assignment for a
significant period of time. Finding all this in one person is difficult enough. However, each of us also hopes beyond
hope that we will find a tutor who is willing to explore any and all reasonable methods to awaken our child's ability to
learn and to express what they know. More often than not, we're lucky if we can find a tutor who has been trained in
the most popular teaching and communication methods for autistic children such as ABA (Applied Behavioral
Analysis) and PECS (Picture Exchange Communication System).
Those of us whose children battle with visual, auditory and/or motor processing challenges often find that our child
doesn't respond well to the standard methods. Months can go by with little significant, consistent signs of progress.
Some children are even let go by the agency providing services when the child fails to show substantial progress.
Where can a parent find someone dedicated enough to help them seek out and explore new methods?
I'd like to present the story of one family who found themselves in just this predicament and solved the matter by
looking no further than their own family tree. I'd like to present the remarkable story of Jacki and Reese.
Jacki retired from an exciting career as a consultant in Human Resources which kept her traveling around the country
for many years. Now in her fifties, her children grown and living on their own, Jacki found that she still had the energy
and desire to keep active and involved. Then on day she learned that her nephew and his wife were looking for tutors
to work with their 3 1/2 year old son, Reese, who had autism. Jacki decided to look into it and immediately felt that
she had found her new niche. Says Jacki, "I knew that there was a smart, clever child in there. We just didn't
know how to get to him!"
Reese's parents, Scott and Sandhya, already had a 40 hour per week ABA program set up for him when Jacki signed
on, as well as occupational and speech therapies. In order to prepare herself for the task, Jacki received training in
ABA, PECS, Floortime, VB (Verbal Behavior Therapy) and some RDI (Relationship Development Intervention).
Reese had been taught to use PECS to communicate and he was successful in using this method to request food,
videos, games, etc. The acquisition of meaningful, interactive communication, however failed to come. The ABA
method's structure and discipline helped to curb Reese's disruptive behaviors at home and Jacki was encouraged to
find that he seemed to be making progress in some areas. However, there were times when Reese would demonstrate
a lack of comprehension in spite of the fact he'd previously shown an understanding of the material.
Inconsistent responses are common when working with children with autism. James Williams, autistic author and
speaker, shed some light on this issue in his essay, 'Understanding: The Free Therapy. (http://www.jamesmw.com/
understand.htm). Says James:
". . . the entire foundation of behavioral therapies for autism is blind obedience. No one ever stops to
explain to the autistic child WHY he has to put the purple block into the purple hole with 80% accuracy in
4 out of 5 trials - - - he is simply expected to do it."
When given an instruction, James explains, the child with autism needs the following:
(1.) to understand what it is that the person wants him/her to do,
(2.) to feel enough of a connection to that person to want to do what he or she asks, and
(3.) to understand the overall goal or purpose of the action.
"Without those elements," says James, "there is fear and resistance."
In addition to the need to understand and relate to what is expected of them, many autistic individuals are challenged
with dyspraxia, a condition that affects their ability to motor plan and physically sequence unfamiliar actions. Motor
planning involves figuring out how to get one's body to carry out the goal for action and involves a lack of internal
sensory awareness of body parts. With a deficit in motor planning, "the child knows the purpose of the object or
task, but cannot organize motor patterns to interact effectively with the environment or to solve the
problem." Due to these challenges and their inflexibility, children with autism may perseverate and will generally tend
to prefer the familiar - familiar environment, familiar tutor, familiar activity. As a result, progress in learning new
materials - or even old ones - can be minimal at best. (ICDL Clinical Practice Guidelines, Chapter 8: Assessment of
Sensory Processing, Praxis, and Motor Performance by G. Gordon Williamson, PhD., O.T.R., Marie E. Nazalone, PhD,
O.T.R., and Barbara E. Hanft, M.A., O.T.R., p. 164 - 165).
In April of 2005, six years after Jacki had begun working with Reese, she attended a conference in Milwaukee that
would change everything. Organized by HALO (Helping Autism through Learning and Outreach - www.halo-soma.
org) and featuring Soma Mukhopadhyay, their Education Director, the conference taught Jacki, along with Reese's
mother Sandhya, his grandmother Hema, and his "grandman" (as Reese calls his grandfather) A.J., about a teaching
and communication method called Rapid Prompting. The method had been created by Soma for her son, Tito who
has autism and could not speak. Jacki had learned about Soma and her Rapid Prompting Method (RPM) by
communicating with parents and individuals on an Internet Autism List. Afterwards, she had seen Soma featured on
television and shared what she'd learned with Sandhya and Reese's father, Scott. When Sandhya learned about the
HALO Conference in Milwaukee, she made arrangements for them all to attend.
Jacki wasn't sure how RPM worked, but she kept an open mind as she listened and watched Soma give her
presentation. Remarkably, in spite of her students' difficulty with motor planning, Soma is able to reach each child's
inner intelligence and encourage it to overcome their body's impulses; to move their hand in such a way that they are
able to communicate what their mind knows. Soma begins by providing them with a means to indicate their intelligence
by asking age appropriate academic questions and writing answer choices for the child to choose from. Based on
each child's experience and skill level, Soma encourages them to move their hand towards, pick up, point to, or circle
with a pencil the correct response. Eventually, children are taught to spell words and sentences by pointing to letters
on a Letterboard or typing their response on a keyboard. The success rate for this method is staggeringly high.
"The big seller for all of us was when Soma started working with the kids," reports Jacki. "She had 3 kids
who had never seen her before and she worked with each one of them twice. The first time they were all
like wild kids, screaming, getting up and wandering; but she was able to get them to work, to answer
questions and to interact with her. The second time she saw them they were like different children;
walking in and sitting down, paying attention - it was like a miracle! That impressed us and at that
moment we knew we had to take Reese to see Soma."
Equally encouraged, Reese's grandmother, Hema urged Sandhya to schedule an appointment for Reese to attend one
of HALO's Camps the following month. The appointment was made and it was just a matter of time before Reese
found himself sitting alongside the woman who would change his life forever.
Camps regularly take place in the HALO clinic located in Austin, Texas. They enable children of out-of-state families
to fly to Austin and work with Soma twice a day for two to four days in a row, providing an intensive and generally
very productive boost to their progress. Says Jacki, "The May camp opened doors for Reese and when I saw the
part of him that I knew was inside, I cried."
Watching Soma unveil her son's intelligence at the Camp, Sandhya was thrilled. She was ready to begin RPM at
home immediately because of her faith in Reese and her belief in this method. Like many parents, Reese's father was
somewhat skeptical at first. Having been disappointed again and again with the many therapies and treatments
available for individuals with autism, Scott was reluctant to buy into the method, just yet.
During the last session of the Camp, Soma encouraged Jacki to work with Reese in font of her so that she could give
Jacki pointers on her technique. Although Jacki felt the experience to be a "baptism of fire", Soma was very
supportive and offered suggestions throughout the lesson. By the end, Jacki was excited and ready to begin using
what she'd learned the moment they returned home.
Back home again, Jacki worked with Reese using Soma's introductory or Beginning RPM that involves tearing
paper into pieces or strips on which answer choices are written. The child is then encouraged to choose the correct
response by picking up the small squares of paper or indicating the answer, out of a choice of two, on the paper strip.
Although Reese had succeeded in getting the majority of answers correct with Soma, at home Jacki found that he
would only get around 60% right. As she and Reese became more comfortable with RPM, however his scores began
to improve. His aides and his family could see clearly how intelligent Reese was and they began to change in the way
that they interacted with him. "One of the biggest changes for all of us close to Reese is that we now talk to
him as we would a normal 10 year old," reports Jacki. "Before, we all talked to him in the ABA fashion
and as if he did not really understand what we were saying"
Although Reese made significant progress with Jacki, she wanted him to continue to succeed as well as he had with
Soma. "I tell Jacki she is too serious!" says Reese jokingly. But Jacki decided to enroll in HALO's Certification
Program. The program is geared towards individuals such as teachers, therapists, support persons and parents who
have a serious interest in learning and using RPM for teaching academics and communication. In July 2005 Jacki flew
back to Austin for the Certification Program and found that it really brought the Rapid Prompting Method into focus
for her. Soma and the HALO organization helped her to fine tune her technique and taught her how to prepare and
organize her lesson plans. Her confidence soared and, upon returning home, she found that Reese responded by
making huge gains in his learning and responsiveness. Says Reese, "I am learning about lots of things. Math is
my favorite. I also like history and geography." In fact, he has made such enormous gains Jacki says, "He may
need a new teacher soon!" He has rapidly advanced from making basic choice responses with paper strips to
spelling out his answers on his ABC-5-Across Letterboard and completing his mathematical problems utilizing the
numbers and mathematical symbols on the back of the Lettterboard.
Six weeks later, as part of her Certification Program, HALO reviewed current video footage of Jacki working with
Reese. Afterwards HALO provided valuable feedback regarding her teaching technique. Jacki spoke on conference
phone with Soma and Linda Lange, HALO President, to discuss her strengths and areas that needed improving. She
came away from this experience with a renewed enthusiasm and was eager to apply what she'd learned. "I needed to
relax, make my tone more conversational and make it a joint learning," she says. "Once I did that, it was
so much better and easier for Reese to learn."
The family took Reese back to another HALO Camp in October, 2005. When Reese's father, Scott, saw Soma
working with his son, he cried. It can be a difficult and deeply emotional step for a parent to accept that their dream
for their child has finally come true after so long a wait.
During the October Camp, Reese asked Soma when he would learn to talk. Soma explained to him that he must be
responsible and work hard with his Speech Therapist. Remembering this guidance and buoyed by his success, Reese
has made greater efforts in learning to speak. When he spells on his Letterboard, Reese says the names of the letters
out loud and he also tries to say words as he works. A triumphant teacher, Jacki tells me, "Reese knows that he is
smart and everyone around him believes he is smart - that's the self confidence, and it will only grow."
Reese is a fortunate young man to have such a devoted and supportive family - a family that also happened to provide
him with a one-in-a-million tutor! Clearly, Jacki has shown us that the most important traits to look for in a tutor are
doggedness, dedication and love.
Lisa Davis Edmond
Copyright February 14, 2006
|The Story of Jacki & Reese
A Family Affair