Ido in Autismland: Climbing Out of Autism by Ido Kedar, eBook 2012; with < My Thoughts > by Sara Luker
< My Thoughts > This posting is a little different in presentation because it has many excerpts from Ido’s Essays, which are also in the book.
Excerpts from the book – (5% indicates location in the Kindle version of the book, instead of page numbers).
< Excerpt from book Forward by Yoram Bonneh, Ph.D., Department of Human Biology, University of Haifa, Israel >
5% I met Ido Kedar in the summer of 2011 and saw an intelligent fifteen year old boy struggling with what he calls the “stupid illness” of autism.
Ido’s observable behavior was exactly like that of a mute child with severe autism, with almost no eye contact, restless movement and self-stimulation and “speech” made of unintelligible sounds.
Yet, from typing and a few other hints, I had no doubt that he was intelligent.
6% Ido tells us the main problem he struggles with is that of ‘output’. Surely he has other problems and difficulties, such as working memory attention, sensory sensitivity, and control of arousal and urges.
< My Thoughts > ‘Output’ –
Sicile-Kira (2014) addresses that for her readers by telling them that “Just because someone is unable to talk doesn’t mean he doesn’t understand what is going on around him. That student’s challenge could be in the ‘output’, not in the understanding of what he hears.” “Assumptions about a child’s intelligence cannot be made because of his lack of communication or social skills.”
< End of excerpt from Bonneh’s Forward >
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<Excerpt from the Introduction by Ido’s mother, Tracy Kedar, >
7% Ido (pronounced – ee-doh), a 15 year old boy, explains:
Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts.
You want to speak and you know what you want to say, but either you can’t get words out, or what comes out are nonsensical sounds…
Or the same embedded phrases you have said thousands of times.
Imagine living in a body that paces or flaps hands or twirls ribbons when your mind wants it to be still or, freezes when your mind pleads with it to react.
You lie in a bed, cold, wishing you could get your body to pull on a blanket.
< My Thoughts > “…wishing you could get your body to pull up on a blanket.”
Motor Skill Learning in Autism: Assessment & Treatment of Altered Patterns of Learning; by Stewart Mostofsky. Retrieved from: https://www.kennedykrieger.org/research-training/currentresearch
Many children with autism have difficulty with ‘self-generated commands’. The reason for this has to do with the wiring of the brain and developing an internal model of behavior. According to writer Stewart Mostofsky, “Children with autism are impaired in their ability to acquire models of action because of their bias towards proprioceptive-guided motor learning.” In other words, their motor learning is mostly directed by what their body senses, as opposed to what it sees that it should be doing.
There is a severe disconnection between his explicit intentional thoughts and his automatic ones, which prevents his true cognitive talents and personality to be expressed by his behavior. So, Ido can’t make himself pull up the blanket even though he sees it and knows what he wants to do. He needs to be able to ‘self-generate’ the command, but he is helpless to do so because his brain wiring won’t allow him to initiate that connection. (Ido talks about this further… see 51%)
7% At other times your body charges forward impulsively, snatching things, or dashing you into the street.
Imagine being stuck in an educational program, year after year, that is designed for preschooler who learns slowly.
You are bored, frustrated, angry, misunderstood and more than a little hopeless. You turn to repetitive behaviors, or ‘stims’, which create a sensory drug-like experience that takes you away from the pain but makes the situation so much worse by pulling you farther from reality.
You are lonely, though surrounded by people, and you know that this will be you entire life if you do not gain a means to communicate more than your basic needs. But no one is teaching you how.
< My Thoughts > “But no one is teaching you how.”
According to Thrum, et al. (2007) a child is considered non-verbal when they have passed the eighteen month mark and have no language. Most children at this age would have “5 or more words used spontaneously on a daily basis.” The authors also give predictors of receptive language as a child responding to simple commands.
In the classroom, before spending time teaching/learning new skills, one must determine if the child will be successful at learning this skill. Within a predictable measure, you may be able to determine if the child has ‘receptive language’. An example of this would be if the child responds to simple commands such as, “Sit down”, “Stand up”, “Come here”. One must be careful here not to assume that if the child does not respond to “Please stop,” that it’s because they don’t know what you are saying. The autistic child is NOT likely to ‘stop’ stimming, or eating dirt, etc. Smiles.
7% As Ido’s mother, I welcome you to Ido’s world. My now fifteen-year-old son, who has autism, emerged from this imprisoning silence after learning to communicate his thoughts by typing or by pointing to letters on a board.
8% Until he was seven, Ido had no means to show anyone that he was intellectually intact. His teachers and myriad experts assumed, based on his difficulty following directions, lack of speech and odd behaviors, that his intellect and knowledge matched his actions.
They insisted that the only way he could learn was by being slowly and progressively instructed in the basic information that human beings need to function.
This would be done through drilling, flashcards and repetition for hours each day in a program known as Applied Behavioral Analysis, or ABA.
< My Thoughts > “…Applied Behavioral Analysis, or ABA.”
Some parents feel that regimented programs, such as ABA, are necessary because if they fail to act rapidly enough they may lose their child to autism, completely. Some parents feel that ABA has saved their child’s life, even reversed their autism. They feel that spending vast sums of money, plus completely restructured their lives was well worth it.
While other parents have the opposite opinion about ABA, saying that this intervention deviates too far from the norm because it requires extreme measures and the child’s total compliance. These parents preferred a program which was more ‘child centered’; where their child learned to express their needs and interests in a more emotional and intellectual way.
Retrieved from http://autismmythbusters.com: This article points out that for many parents, ABA intervention is a therapy based on extreme measures. For example, ‘If the child gets hungry enough he/she will eat.’ However, this is rarely the outcome with an autistic child. The program is also extremely time consuming, it becomes a full time job. The article asks, “What will the child remember, endless days of therapy or how you established future abilities?” Tough questions.
8% While specialists held meetings in Ido’s presence to talk about why he didn’t progress on a drill, or how to improve his score on another, on the inside he was screaming, “I understand! I already know what a tree is. Please help me learn to communicate!”
< My Thoughts > “…I already know what a tree is. Please help me learn to communicate!”
As parents and as ‘consumers’ you want to extensively research any program, observe sessions and make certain you can change your mind if you need to; hopefully before you mortgage your house. Know that an ‘intensive’ program usually refers to 25 - 40 hours per week, in your home with various ‘persons’ spending the day. You must stay there throughout the sessions, not go out to run a few errands or take your other children to school or events. Please make an informed consent. Smiles.
8% On the outside, the scream came out through his hands, vigorously flapping at the wrists. This was quickly redirected with the command, “Hands quiet.” He was trapped.
< My Thoughts > “…the scream came out through his hands…”
9% It is challenging for those who focus on the clearly visible impairments to imagine that some of these hand-flapping, string-waving children might understand normal speech and think internally.
Fortunately, the communicative potential in non-verbal autistic people is getting harder and harder to refute. There are ever more non-verbal autistic people learning to communicate by pointing to letters and by typing, and some like Ido, are going public.
< My Thoughts > “…the communicative potential in non-verbal autistic people…”
Sicile-Kira (2014) says… “Some or all of their senses are one hundred times more sensitive than others, and therefore they process the environment differently from neurotypicals (i.e., individuals considered to be ‘normal’). Secondly, more and more it is being recognized that many with autism have challenges with the ‘output’ that is, they may hear and understand what is being said (the ‘input’), but they are unable to respond verbally. Providing alternative means of communicating can be life changing for many.”
10% All parents of autistic children hope that inside, behind all the impossible behaviors, exists a normal child struggling to get out. I remember being saddened to read from more than one well-respected source that this hope was foolhardy, that to believe this might be so was to be in denial, that parents needed to accept that behind their child’s autistic behaviors lay an autistic soul.
Apparently it is okay to drill normalcy into someone, but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body. These theories cost us dearly.
< My Thoughts > “…but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body.”
Know that there are three common interventions considered to be successful and ‘Best Practices’ for children with autism: Lovaas’ Applied Behavior Analysis (ABA), Greenspan’s Floor Time, and Schopler’s Structured Teaching. In any case, always check the credentials of those persons working with your child.
Retrieved from http://autismmythbusters.com. Autism is not a single, definable collection of traits or characteristics, but a combination of behaviors from a wide spectrum. They cannot learn well in a traditional classroom. But they can learn when provided with the appropriate tools to help them overcome learning difficulties, control repetitive or self-injurious behavior, but does it create an acceptance for that individual?
10% Language is our pathway to connecting deeply with others. To be denied communication is to limit one to a life of frustration, loneliness and being misunderstood. Ido calls it “a crime against humanity.” …imagine Stephen Hawking’s life without his computer.
< My Thoughts > “…imagine Stephen Hawking’s life without his computer.”
For the non-verbal (aka non-vocal) community, communication technology gives them a voice. Technology is available in many forms and is usually described as ‘low’, ‘mid’, and ‘high’ tech. ‘Low tech’ would generally be posters with visual daily schedule, binder with visuals, or infant ‘sign’ language; ‘mid tech’ would be tape recorders/players, simple voice output devices; ‘high tech’ would be video cameras, computer with software, complex voice output devices. Now, iPads and smart phone ‘apps’ are designed for and used by many, and would be considered ‘high tech’.
Shic & Goodwin (2015) explain that improvements in the portability and sophistication of today’s technology puts it within reach of today’s individuals with autism. These “technology innovations are rapidly beginning to find a role in the daily lives of individuals with ASD” and other developmental issues.
12% When Ido was eight or nine years old, we were told by a specialist that we should accept the fact that he was not likely to progress much more.
Certainly it was never suggested to us that he might blossom if we adopted and entirely different approach, by offering him a form of communication he could more easily access through typing or letter board.
13% When Ido finally got out of his “low functioning” autism class and was placed into a “high functioning” class, he struggled tremendously. His autism manifested itself so differently from the other children’s.
He was much more impaired in terms of independence, speech and self-control, but his racing mind flew through lessons that he had to wait for the other children to grasp.
His “high functioning” autistic classmates had different struggles. As Ido observed, “They are not a verbal version of me and I am not a non-verbal version of them. It’s something else, I think.”
14% Every parent of an autistic child knows that once your child is diagnosed you have to become an expert very quickly.
15% Parents juggle who will be home, who will work, who will drive the child to speech, occupational, and other therapies, and whether they can afford hired support.
For the first three years of Ido’s home-based program, my husband was the one who put his career on hold.
All day long, little Ido was taken to the table in his room by instructors who came and went throughout the day and asked to point to flashcards or stand up and touch his head or his nose.
16% Ido was incessantly corrected yet the behaviors persisted.
He developed a fascination with letters, staring intently at the alphabet poster he had in his bedroom, staring at signs and license plates, dancing and flapping with delight with the credits at the end of a video or TV program.
“He is fixating on letters,” our behavior modification supervisor told us. “Take away his poster. Don’t let him stare at letters.”
16% So we did, not realizing that our brilliant little guy, knowing that he couldn’t speak, was teaching himself to read.
< My Thoughts > “He was teaching himself to read…”
The great mystery for me is how children with autism can teach themselves to read, yet there is countless proof of this in stories and in classrooms. As a reading teacher I learned that early neurotypicals readers have a great curiosity, a great imagination, and the ability to figure things out. They find enjoyment in solving puzzles. Now I believe that many young autistic children also have these attributes. Smiles.
18% So this was Ido’s life. Pre-school in the morning. Forty hours of ABA a week. Speech therapy and occupational therapy and music therapy and other interventions we gambled on and hoped would work.
18% Ido got older and he still couldn’t speak, communicate non-verbally, follow instructions, or control his behavior. But we plowed on.
When Ido was about four, we sat on the sofa reading The Jungle Book. This was his favorite Disney movie. He had seen it dozens of times.
I asked him to touch pictures in the book…my hand lightly supporting under his arm near the elbow. “Where’s Mowgli?” “Touch Ballou.” And so on. Ido correctly answered each question.
I remember the closeness I felt to him at that moment and I knew he understood. I knew that I had provided him with very light support under his arm that seemed to ‘unstick’ him somehow, but I also knew that I hadn’t been moving his arm or manipulating it.
18% (To show my husband) …I tried the exercise again without me supporting his arm or touching him – this time with high stakes.
This time his pointing was random. He hit none of his targets. “I guess you’re right. He doesn’t understand. I didn’t think I was moving him, but maybe I was,” I confessed.
Ido writes that hope slipped away from him at that point and he died inside a little. I think part of me did too.
18% It took several more years for Ido to be able to show me that he was not the blank slate that we had been told he was. In the meantime, Ido went from kindergarten to grade school. As he grew his curriculum stayed the same.
20% He was finally able to communicate with me when he was seven as we worked on his birthday party invitations. It was like a miracle.
Hand over hand, I asked Ido to write down words on his party invitations and I told him what to write letter by letter. B-I-R-T-H-D-A-Y.
Then I told him to add in his friend’s name. But before I could tell him the letters and spell it out I felt the pencil moving under my hand.
He spelled out the word. I tried this again and again with other words without spelling out the letters for him. He spelled them accurately each time without me stating the letter out loud and without me manipulating his hand in any way.
I knew I wasn’t “inadvertently” doing a darn thing. I was supporting his hand, not moving it Ouija-board style. That’s when I knew. I KNEW this time. Ido understood. He was not cognitively impaired.
21% I took out paper and talked to him. I was completely overcome with emotion, with guilt, with regret, with joy. We conversed for the first time in our lives.
I apologized to him for misunderstanding and mishandling things in the past.
I asked him why he never showed me before that he understood and could read and write.
Slowly, chicken scratching under my hand he spelled, “I didn’t know how to.”
21% Ido had a lot of resentment because he had been so trapped. It was later exacerbated because no one initially accepted what I had to say.
But this time I was not going to be deterred. I was absolutely certain that I was right and with certainty comes the confidence to stick to your beliefs in spite of hostile pressures. It was a very lonely time.
He sat in school, learning nothing, looking at toddler books, adding single digit numbers and at home he was writing essays, doing science and multiplying and dividing double digits.
21% Ido’s tutor first learned how to support his handwriting through facilitation, and later she learned how to use the letter board with him.
We began to search for someone who could help him learn to write without support. Miraculously, Soma Mukhopadhyay, who discovered a method she called Rapid Prompting Method (RPM) to teach her own severely autistic son, Tito, to type and express his thoughts, was living nearby at that time.
The first lesson was like nothing Ido had ever experienced before. Soma, a tiny Indian woman in a brightly colored sari, began working him immediately. She showed Ido a grade-level appropriate science lesson in a textbook and began asking him questions about the lesson that assumed both his intelligence and his comprehension.
23% It was all about grade-appropriate learning and communication.
< My Thoughts > “It was all about grade-appropriate learning and communication”
Soma Mukhopadhyay (2013) tell us that the “Primary learning channels are: Visual & Auditory and the Secondary learning channels are Tactile & Kinesthetic.” She says that, “A creative teacher will try and stimulate as many open learning channels as can be delivered in the lesson.” She also points out that one must use curriculum-based, age appropriate subjects when working with the child.
“If the teacher can be patient and get the student to spell out or chose a word, then she can be sure that the student has come a long way.” That “emerging spelling skills and motor development come after giving physical support on the student’s performing hand.”
24% As Ido’s letter board skills progressed, it became harder and harder to deny that he was communicating.
25% …in the fifth grade Ido was finally removed from his remedial autism class and sent to another school with a “high functioning” autism class. He finally had his first opportunity to receive an actual academic education in school.
26% …a psychologist Ido worked with asked him to share with her what ‘stims’ meant to him. Ido sat down and analyzed his self stimulatory behavior. He realized that he could explain autism from the inside out, describing his symptoms and puzzling behaviors one by one. As he did, he began to understand himself better.
27% Many times Ido reacted emotionally to the topic. Sometimes he hopped up, flapped his hands, or paced the room, but he always came back to complete his essay.
It was emotionally difficult for him to revisit the pain and frustration of his early years when he felt so trapped and terrified that his true intelligence might never be discovered.
At the same time, the writing helped him to work through the trauma of this experience.
27% Ido’s latter essays reflect a young man who is finding a way to deal with the unwanted challenges of living with autism and to make meaning out of his suffering. Ido says, “I can’t stim my life away.”
His story of the triumph of the indomitable human spirit. It is an inspiration to anyone who has struggled.
Although Ido’s book was written via letter board, he has successfully transitioned to typing on an iPad as well. In the first sentence he typed on his iPad he wrote that no one would have doubt any more whether he did his own work or wrote his own writings.
The iPad sits propped up on a table and, as always, Ido types each letter with no one touching him. As he types, each letter appears on the screen.
When he is finished typing he pushes the “speak” button and a human sounding voice speaks his words out loud.
…he is embracing the new technology in hopes that it will help him find his voice in the world.
< End of excerpt from the Introduction by Ido’s mother, Tracy Kedar, >
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< Excerpts from Ido’s Essays > & < My Thoughts >, by Sara Luker
29% < Ido’s Essay Excerpt > “ ‘Stims’: I am so needy to escape reality and ‘stims’ take me to another world. I feel forces like waves of sensory energy. I am bombarded with silver lights and streams of color. It’s beautiful to watch. They mesmerize me, but sometimes they scare me.”
“It’s beautiful to watch. They mesmerize me…”
< My Thoughts > “…‘stims’ take me to another world.” “It’s beautiful to watch. They mesmerize me…”
As a parent and teacher, the child can look attentive, or may be staring into space, but possibly the child is combating the sensory stimulation (‘stims’) of lights and colors which no one else can see.
Note: Some students say they see colors emitting from the bodies of others, much like those with epilepsy see an aura of colors just before they experience a seizure.
Sensory excitement can trigger stimming (hand-flapping, head-hitting, hair pulling, scratching, or biting, or whatever seems to break the circuit). Remember that this stimming action is a physiological response, not a thoughtful action.
What it looks like in the General Education Classroom – Especially sensitive students may need the computer screen or white board dimmed to help them stay with a task longer. They should also be encouraged to look away from the screen/board frequently. At home that would apply to any screens the child is using…TV, computer, iPad.
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30% < Ido’s Essay Excerpt > “I hope that writing my feelings to others will let me free myself from flapping’s hold over my response to strong feelings. People often guess that I’m uncomfortable physically and it’s really not that at all, I flap more from irritation. The “experts” mostly never get it right. They assume we are some autistic, retarded stim-machine, not a trapped thinking person who has a shitty neurological illness. They need to limit our behaviors and stop the impulsive acts, I know. Still, it would be so nice if they realized how intact our minds were.”
< My Thoughts > “…not a trapped thinking person.”
Actually, there is a study that does believe that there is a link between the ‘stimming’ symptoms of autism and thinking (cognition) ability of that person. Donohue, et al. (2012) found that ‘higher level’ forms of cognition rely upon ‘low level’ sensory processing (‘stimming’) in persons with autism. They also believe that “…these links may ultimately help to explain some of their deficits in communication and social cognition difficulties.” In other words, when ‘stimming’ isn’t allowed it may prevent or interfere with the person’s ability to communicate or recognize faces. Hmmm.
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30% < Ido’s Essay Excerpt > “Internal and external distractions – I can’t stop my senses. No one can. But mine overwhelm me. I hear my dog bark like a gunshot. My ears ring and I lose focus on my task.”
< My Thoughts > “I can’t stop my senses.”
What this looks like at home, in the community, and at school is the child will cover his or her ears and my also stim excitedly. Sometimes the stimming is a delayed reaction, but it is still tied to being startled or overwhelmed by a noise or sound.
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35% < Ido’s Essay Excerpt > “It’s hard to speak because apraxia is like a bad phone connection. I know my thoughts are getting lost on the way to my mouth. I might think about a baseball game and say something like, “cookie” or “tickle.” I get irritated by my inability to get my thoughts out. It’s the most horrible aspect of my autism. It is the loneliest thing you can imagine.”
< My Thoughts > “…apraxia is like a bad phone connection.”
Retrieved from: The ASHA Leader, September 2015, Vol. 20”18; “Autism and apraxia frequently coincide,” according to findings from the Penn State Milton S. Hershey Medical Center. Diagnostic screening determines which children have apraxia, as opposed to those who are just non-verbal, have slowly developing speech, or as a result of a head injury, brain tumor, or stroke.
“Present from birth, apraxia is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. This is NOT due to a paralysis of the speech muscles (face, tongue, and lips).” “A person with severe apraxia may need the help of alternative or additional communication methods.” There are so many kinds of augmentative communication available…from low-tech infant sign language to high-tech Smart Phone and computer apps.
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40% < Ido’s Essay Excerpt > “I don’t really understand the link between autism and high intelligence but it is obviously there. The irony is that we seem dumb but are often a lot smarter than average, but since we can’t express our thoughts we have to endure lessons in school that would bore a three year old.”
< My Thoughts > Parents and teachers should give the child the opportunity to take in the age-level or grade-level information, even if they can’t get it out. A neurologist once told me, “Get as much information in…and as much information out, as you can!” That became my motto.
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51% < Ido’s Essay Excerpt > “My proprioception is messed up. I need my eyes to tell me where my hands and legs are. This is hard because it means I have to visually pay attention to my body. It interferes with physical sports especially if I can’t see my legs. My exercising is helping me to feel my body more…more connected to my brain.”
< My Thoughts > “My proprioception is messed up.”
Proprioception is a sense of perception of the movements of one’s limbs, independent of vision. Sassano (2009)explains that… “Typically developing children generalized in both proprioceptive and visual coordinates when generating models of behavior; whereas, children with autism only generalized in proprioceptive coordinates…” In other words, vision doesn’t play a role in their movement, only their body’s sensory field tells them where their body parts are and what they are doing. That’s why Ido found that he couldn’t pull up a blanket when he was cold. (See 7%).
Most schools offer occupational therapists that can accompany students to the Physical Education class and can show the teacher and aide as how to help guide exercises. Parents can consult with a private person in this field to help give them ideas. Many families find that bringing a trampoline, swings, and floor mats into a home area can provide fun for all and give everyone more opportunity to interact. Thus, less isolation and loneliness.
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67% < Ido’s Essay Excerpt > “Some kids have kinder hearts. They say “hi” and work in groups with me and treat me well. I am starting to feel more relaxed with typical kids so mainstreaming has made me interested in expanding my world.”
< My Thoughts > “…work in groups…”
A teacher who knows his/her students can pick a working group which will work comfortably with this student. The teacher would prepare the group by role playing patience and tolerance, in order to create an understanding of what strategies may be needed. Example – The group should allow “wait time” for a response and anticipate that the student may use the letter board, or the computer to communicate with the group.
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72% < Ido’s Essay Excerpt> “The IEP Committee last week determined that I will be mainstreamed all day next year, so I will no longer be a special education student. I will be a general education student. This is amazing from a School District that once denied I could even communicate.”
< My Thoughts > “I will be a general education student.”
When a student becomes part of an inclusion program, “mainstreamed,” they may need an afterschool tutor or longer dedicated parent time at home, because of increased homework, weekly textbook chapter reading/testing, student projects, and possible sport or after-school study activities.
Keeping in mind that your student will possibly/probably take longer to do the work necessary to complete the task, allow plenty of time in order to keep frustration to a minimum.
If the student is still under and Special Education Individual Education Plan (IEP), then length of assignments, due dates, and other requirements may be adjusted as an accommodation. This doesn’t mean “dumb-down” the content, only keep expectations reasonable. Many times these students are also perfectionists and want to do and redo assignments. This can be better controlled by breaking the assignment down into parts and having completion dates for each part; while keeping the big picture in mind. Try using a chart/calendar or other visual reminder to facilitate this process.
Also note that these students are often uniquely inspired and may take a different approach to problem solving, as well as approach a topic from a different perspective. My experience has been that everyone can learn from their inspired thoughts.
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80% < Ido’s Essay Excerpt > “On to High School”
“I am not under any illusions that the school is thrilled to have a seriously disabled student. I am a challenge. I am expensive because I need an aide. But I am a student who is pioneering opportunities for the disabled too.”
< My Thoughts > “I am expensive because I need an aide.”
Unfortunately, many teachers, administrators, and support staff are under extreme pressure to perform above and beyond what they signed on for…so to speak.
Teachers deal with many classroom challenges. The pressure of districts expecting teachers to produce students with high test scores; as well as dealing with overcrowded classrooms and sometimes working with ‘underqualified’ personnel, just to name a few.
Often it is difficult to keep everyone focused, engaged and motivated. Teachers want to teach effective lessons and give every student the opportunity to have a memorable educational experience, but the reality is that in high school and middle school…every 45 minutes or so, they send in a fresh team! And, every class has its own challenging personality, energy level, and intent.
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81% < Ido’s Essay Excerpt > “I can’t deal with the one-hundred plus degree temperature… Lunch, nutrition, and P.E. are like saunas. I try to imagine swimming in an icy lake. It doesn’t help.”
< My Thoughts > “I can’t deal with the one-hundred plus degree temperature…”
Some children with autism are very sensitive to temperature, temperature change, and the sound of an air conditioner or heater going on and off can distract them terribly or send them into sensory stress overload. This is also a very hard one to catch on to and often the child doesn’t really know what is annoying them.
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< My Thoughts >
98% This book provides a comprehensive Glossary of 15 terms used in the book, and explained by Ido.
94% Plus, some Conversations on Autism between Yoram Bonneh Ph.D.(Neuro-scientist & Autism Researcher), (YB) and Ido, in the Appendix.
< Excerpt > YB: What do visual words look like? IK: They are a lightning fast swirl of lights and letters. They are my thoughts in a laser light show. Not in a straight line. They move. They stir or swirl and I strive to catch my thoughts in there.
< End of excerpts from Ido’s Essays & My Thoughts >
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References used in < My Thoughts > are:
Donohue, S., Darling, E., Mitroff, S. (2012). Links Between Multisensory Processing & Autism; Experimental Brain Research Journal; DOI 10.1007/s00221-012-3223-4.
Mukhopadhyay, S. (2013). Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language; Outskirts Press, 1st Ed.
Sassano, L. (2009). Children With Autism Rely on Proprioception During Motor Learning; Neurology Reviews V17(12):8,9.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, NY:Penguin Random House Company.
Thrum, A., Lord, C. Li-Ching, L., Newschaffer, C. (2007). Predictors of Language Acquisition in Preschool Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V.37:9.
< My Thoughts > This posting is a little different in presentation because it has many excerpts from Ido’s Essays, which are also in the book.
Excerpts from the book – (5% indicates location in the Kindle version of the book, instead of page numbers).
< Excerpt from book Forward by Yoram Bonneh, Ph.D., Department of Human Biology, University of Haifa, Israel >
5% I met Ido Kedar in the summer of 2011 and saw an intelligent fifteen year old boy struggling with what he calls the “stupid illness” of autism.
Ido’s observable behavior was exactly like that of a mute child with severe autism, with almost no eye contact, restless movement and self-stimulation and “speech” made of unintelligible sounds.
Yet, from typing and a few other hints, I had no doubt that he was intelligent.
6% Ido tells us the main problem he struggles with is that of ‘output’. Surely he has other problems and difficulties, such as working memory attention, sensory sensitivity, and control of arousal and urges.
< My Thoughts > ‘Output’ –
Sicile-Kira (2014) addresses that for her readers by telling them that “Just because someone is unable to talk doesn’t mean he doesn’t understand what is going on around him. That student’s challenge could be in the ‘output’, not in the understanding of what he hears.” “Assumptions about a child’s intelligence cannot be made because of his lack of communication or social skills.”
< End of excerpt from Bonneh’s Forward >
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<Excerpt from the Introduction by Ido’s mother, Tracy Kedar, >
7% Ido (pronounced – ee-doh), a 15 year old boy, explains:
Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts.
You want to speak and you know what you want to say, but either you can’t get words out, or what comes out are nonsensical sounds…
Or the same embedded phrases you have said thousands of times.
Imagine living in a body that paces or flaps hands or twirls ribbons when your mind wants it to be still or, freezes when your mind pleads with it to react.
You lie in a bed, cold, wishing you could get your body to pull on a blanket.
< My Thoughts > “…wishing you could get your body to pull up on a blanket.”
Motor Skill Learning in Autism: Assessment & Treatment of Altered Patterns of Learning; by Stewart Mostofsky. Retrieved from: https://www.kennedykrieger.org/research-training/currentresearch
Many children with autism have difficulty with ‘self-generated commands’. The reason for this has to do with the wiring of the brain and developing an internal model of behavior. According to writer Stewart Mostofsky, “Children with autism are impaired in their ability to acquire models of action because of their bias towards proprioceptive-guided motor learning.” In other words, their motor learning is mostly directed by what their body senses, as opposed to what it sees that it should be doing.
There is a severe disconnection between his explicit intentional thoughts and his automatic ones, which prevents his true cognitive talents and personality to be expressed by his behavior. So, Ido can’t make himself pull up the blanket even though he sees it and knows what he wants to do. He needs to be able to ‘self-generate’ the command, but he is helpless to do so because his brain wiring won’t allow him to initiate that connection. (Ido talks about this further… see 51%)
7% At other times your body charges forward impulsively, snatching things, or dashing you into the street.
Imagine being stuck in an educational program, year after year, that is designed for preschooler who learns slowly.
You are bored, frustrated, angry, misunderstood and more than a little hopeless. You turn to repetitive behaviors, or ‘stims’, which create a sensory drug-like experience that takes you away from the pain but makes the situation so much worse by pulling you farther from reality.
You are lonely, though surrounded by people, and you know that this will be you entire life if you do not gain a means to communicate more than your basic needs. But no one is teaching you how.
< My Thoughts > “But no one is teaching you how.”
According to Thrum, et al. (2007) a child is considered non-verbal when they have passed the eighteen month mark and have no language. Most children at this age would have “5 or more words used spontaneously on a daily basis.” The authors also give predictors of receptive language as a child responding to simple commands.
In the classroom, before spending time teaching/learning new skills, one must determine if the child will be successful at learning this skill. Within a predictable measure, you may be able to determine if the child has ‘receptive language’. An example of this would be if the child responds to simple commands such as, “Sit down”, “Stand up”, “Come here”. One must be careful here not to assume that if the child does not respond to “Please stop,” that it’s because they don’t know what you are saying. The autistic child is NOT likely to ‘stop’ stimming, or eating dirt, etc. Smiles.
7% As Ido’s mother, I welcome you to Ido’s world. My now fifteen-year-old son, who has autism, emerged from this imprisoning silence after learning to communicate his thoughts by typing or by pointing to letters on a board.
8% Until he was seven, Ido had no means to show anyone that he was intellectually intact. His teachers and myriad experts assumed, based on his difficulty following directions, lack of speech and odd behaviors, that his intellect and knowledge matched his actions.
They insisted that the only way he could learn was by being slowly and progressively instructed in the basic information that human beings need to function.
This would be done through drilling, flashcards and repetition for hours each day in a program known as Applied Behavioral Analysis, or ABA.
< My Thoughts > “…Applied Behavioral Analysis, or ABA.”
Some parents feel that regimented programs, such as ABA, are necessary because if they fail to act rapidly enough they may lose their child to autism, completely. Some parents feel that ABA has saved their child’s life, even reversed their autism. They feel that spending vast sums of money, plus completely restructured their lives was well worth it.
While other parents have the opposite opinion about ABA, saying that this intervention deviates too far from the norm because it requires extreme measures and the child’s total compliance. These parents preferred a program which was more ‘child centered’; where their child learned to express their needs and interests in a more emotional and intellectual way.
Retrieved from http://autismmythbusters.com: This article points out that for many parents, ABA intervention is a therapy based on extreme measures. For example, ‘If the child gets hungry enough he/she will eat.’ However, this is rarely the outcome with an autistic child. The program is also extremely time consuming, it becomes a full time job. The article asks, “What will the child remember, endless days of therapy or how you established future abilities?” Tough questions.
8% While specialists held meetings in Ido’s presence to talk about why he didn’t progress on a drill, or how to improve his score on another, on the inside he was screaming, “I understand! I already know what a tree is. Please help me learn to communicate!”
< My Thoughts > “…I already know what a tree is. Please help me learn to communicate!”
As parents and as ‘consumers’ you want to extensively research any program, observe sessions and make certain you can change your mind if you need to; hopefully before you mortgage your house. Know that an ‘intensive’ program usually refers to 25 - 40 hours per week, in your home with various ‘persons’ spending the day. You must stay there throughout the sessions, not go out to run a few errands or take your other children to school or events. Please make an informed consent. Smiles.
8% On the outside, the scream came out through his hands, vigorously flapping at the wrists. This was quickly redirected with the command, “Hands quiet.” He was trapped.
< My Thoughts > “…the scream came out through his hands…”
9% It is challenging for those who focus on the clearly visible impairments to imagine that some of these hand-flapping, string-waving children might understand normal speech and think internally.
Fortunately, the communicative potential in non-verbal autistic people is getting harder and harder to refute. There are ever more non-verbal autistic people learning to communicate by pointing to letters and by typing, and some like Ido, are going public.
< My Thoughts > “…the communicative potential in non-verbal autistic people…”
Sicile-Kira (2014) says… “Some or all of their senses are one hundred times more sensitive than others, and therefore they process the environment differently from neurotypicals (i.e., individuals considered to be ‘normal’). Secondly, more and more it is being recognized that many with autism have challenges with the ‘output’ that is, they may hear and understand what is being said (the ‘input’), but they are unable to respond verbally. Providing alternative means of communicating can be life changing for many.”
10% All parents of autistic children hope that inside, behind all the impossible behaviors, exists a normal child struggling to get out. I remember being saddened to read from more than one well-respected source that this hope was foolhardy, that to believe this might be so was to be in denial, that parents needed to accept that behind their child’s autistic behaviors lay an autistic soul.
Apparently it is okay to drill normalcy into someone, but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body. These theories cost us dearly.
< My Thoughts > “…but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body.”
Know that there are three common interventions considered to be successful and ‘Best Practices’ for children with autism: Lovaas’ Applied Behavior Analysis (ABA), Greenspan’s Floor Time, and Schopler’s Structured Teaching. In any case, always check the credentials of those persons working with your child.
Retrieved from http://autismmythbusters.com. Autism is not a single, definable collection of traits or characteristics, but a combination of behaviors from a wide spectrum. They cannot learn well in a traditional classroom. But they can learn when provided with the appropriate tools to help them overcome learning difficulties, control repetitive or self-injurious behavior, but does it create an acceptance for that individual?
10% Language is our pathway to connecting deeply with others. To be denied communication is to limit one to a life of frustration, loneliness and being misunderstood. Ido calls it “a crime against humanity.” …imagine Stephen Hawking’s life without his computer.
< My Thoughts > “…imagine Stephen Hawking’s life without his computer.”
For the non-verbal (aka non-vocal) community, communication technology gives them a voice. Technology is available in many forms and is usually described as ‘low’, ‘mid’, and ‘high’ tech. ‘Low tech’ would generally be posters with visual daily schedule, binder with visuals, or infant ‘sign’ language; ‘mid tech’ would be tape recorders/players, simple voice output devices; ‘high tech’ would be video cameras, computer with software, complex voice output devices. Now, iPads and smart phone ‘apps’ are designed for and used by many, and would be considered ‘high tech’.
Shic & Goodwin (2015) explain that improvements in the portability and sophistication of today’s technology puts it within reach of today’s individuals with autism. These “technology innovations are rapidly beginning to find a role in the daily lives of individuals with ASD” and other developmental issues.
12% When Ido was eight or nine years old, we were told by a specialist that we should accept the fact that he was not likely to progress much more.
Certainly it was never suggested to us that he might blossom if we adopted and entirely different approach, by offering him a form of communication he could more easily access through typing or letter board.
13% When Ido finally got out of his “low functioning” autism class and was placed into a “high functioning” class, he struggled tremendously. His autism manifested itself so differently from the other children’s.
He was much more impaired in terms of independence, speech and self-control, but his racing mind flew through lessons that he had to wait for the other children to grasp.
His “high functioning” autistic classmates had different struggles. As Ido observed, “They are not a verbal version of me and I am not a non-verbal version of them. It’s something else, I think.”
14% Every parent of an autistic child knows that once your child is diagnosed you have to become an expert very quickly.
15% Parents juggle who will be home, who will work, who will drive the child to speech, occupational, and other therapies, and whether they can afford hired support.
For the first three years of Ido’s home-based program, my husband was the one who put his career on hold.
All day long, little Ido was taken to the table in his room by instructors who came and went throughout the day and asked to point to flashcards or stand up and touch his head or his nose.
16% Ido was incessantly corrected yet the behaviors persisted.
He developed a fascination with letters, staring intently at the alphabet poster he had in his bedroom, staring at signs and license plates, dancing and flapping with delight with the credits at the end of a video or TV program.
“He is fixating on letters,” our behavior modification supervisor told us. “Take away his poster. Don’t let him stare at letters.”
16% So we did, not realizing that our brilliant little guy, knowing that he couldn’t speak, was teaching himself to read.
< My Thoughts > “He was teaching himself to read…”
The great mystery for me is how children with autism can teach themselves to read, yet there is countless proof of this in stories and in classrooms. As a reading teacher I learned that early neurotypicals readers have a great curiosity, a great imagination, and the ability to figure things out. They find enjoyment in solving puzzles. Now I believe that many young autistic children also have these attributes. Smiles.
18% So this was Ido’s life. Pre-school in the morning. Forty hours of ABA a week. Speech therapy and occupational therapy and music therapy and other interventions we gambled on and hoped would work.
18% Ido got older and he still couldn’t speak, communicate non-verbally, follow instructions, or control his behavior. But we plowed on.
When Ido was about four, we sat on the sofa reading The Jungle Book. This was his favorite Disney movie. He had seen it dozens of times.
I asked him to touch pictures in the book…my hand lightly supporting under his arm near the elbow. “Where’s Mowgli?” “Touch Ballou.” And so on. Ido correctly answered each question.
I remember the closeness I felt to him at that moment and I knew he understood. I knew that I had provided him with very light support under his arm that seemed to ‘unstick’ him somehow, but I also knew that I hadn’t been moving his arm or manipulating it.
18% (To show my husband) …I tried the exercise again without me supporting his arm or touching him – this time with high stakes.
This time his pointing was random. He hit none of his targets. “I guess you’re right. He doesn’t understand. I didn’t think I was moving him, but maybe I was,” I confessed.
Ido writes that hope slipped away from him at that point and he died inside a little. I think part of me did too.
18% It took several more years for Ido to be able to show me that he was not the blank slate that we had been told he was. In the meantime, Ido went from kindergarten to grade school. As he grew his curriculum stayed the same.
20% He was finally able to communicate with me when he was seven as we worked on his birthday party invitations. It was like a miracle.
Hand over hand, I asked Ido to write down words on his party invitations and I told him what to write letter by letter. B-I-R-T-H-D-A-Y.
Then I told him to add in his friend’s name. But before I could tell him the letters and spell it out I felt the pencil moving under my hand.
He spelled out the word. I tried this again and again with other words without spelling out the letters for him. He spelled them accurately each time without me stating the letter out loud and without me manipulating his hand in any way.
I knew I wasn’t “inadvertently” doing a darn thing. I was supporting his hand, not moving it Ouija-board style. That’s when I knew. I KNEW this time. Ido understood. He was not cognitively impaired.
21% I took out paper and talked to him. I was completely overcome with emotion, with guilt, with regret, with joy. We conversed for the first time in our lives.
I apologized to him for misunderstanding and mishandling things in the past.
I asked him why he never showed me before that he understood and could read and write.
Slowly, chicken scratching under my hand he spelled, “I didn’t know how to.”
21% Ido had a lot of resentment because he had been so trapped. It was later exacerbated because no one initially accepted what I had to say.
But this time I was not going to be deterred. I was absolutely certain that I was right and with certainty comes the confidence to stick to your beliefs in spite of hostile pressures. It was a very lonely time.
He sat in school, learning nothing, looking at toddler books, adding single digit numbers and at home he was writing essays, doing science and multiplying and dividing double digits.
21% Ido’s tutor first learned how to support his handwriting through facilitation, and later she learned how to use the letter board with him.
We began to search for someone who could help him learn to write without support. Miraculously, Soma Mukhopadhyay, who discovered a method she called Rapid Prompting Method (RPM) to teach her own severely autistic son, Tito, to type and express his thoughts, was living nearby at that time.
The first lesson was like nothing Ido had ever experienced before. Soma, a tiny Indian woman in a brightly colored sari, began working him immediately. She showed Ido a grade-level appropriate science lesson in a textbook and began asking him questions about the lesson that assumed both his intelligence and his comprehension.
23% It was all about grade-appropriate learning and communication.
< My Thoughts > “It was all about grade-appropriate learning and communication”
Soma Mukhopadhyay (2013) tell us that the “Primary learning channels are: Visual & Auditory and the Secondary learning channels are Tactile & Kinesthetic.” She says that, “A creative teacher will try and stimulate as many open learning channels as can be delivered in the lesson.” She also points out that one must use curriculum-based, age appropriate subjects when working with the child.
“If the teacher can be patient and get the student to spell out or chose a word, then she can be sure that the student has come a long way.” That “emerging spelling skills and motor development come after giving physical support on the student’s performing hand.”
24% As Ido’s letter board skills progressed, it became harder and harder to deny that he was communicating.
25% …in the fifth grade Ido was finally removed from his remedial autism class and sent to another school with a “high functioning” autism class. He finally had his first opportunity to receive an actual academic education in school.
26% …a psychologist Ido worked with asked him to share with her what ‘stims’ meant to him. Ido sat down and analyzed his self stimulatory behavior. He realized that he could explain autism from the inside out, describing his symptoms and puzzling behaviors one by one. As he did, he began to understand himself better.
27% Many times Ido reacted emotionally to the topic. Sometimes he hopped up, flapped his hands, or paced the room, but he always came back to complete his essay.
It was emotionally difficult for him to revisit the pain and frustration of his early years when he felt so trapped and terrified that his true intelligence might never be discovered.
At the same time, the writing helped him to work through the trauma of this experience.
27% Ido’s latter essays reflect a young man who is finding a way to deal with the unwanted challenges of living with autism and to make meaning out of his suffering. Ido says, “I can’t stim my life away.”
His story of the triumph of the indomitable human spirit. It is an inspiration to anyone who has struggled.
Although Ido’s book was written via letter board, he has successfully transitioned to typing on an iPad as well. In the first sentence he typed on his iPad he wrote that no one would have doubt any more whether he did his own work or wrote his own writings.
The iPad sits propped up on a table and, as always, Ido types each letter with no one touching him. As he types, each letter appears on the screen.
When he is finished typing he pushes the “speak” button and a human sounding voice speaks his words out loud.
…he is embracing the new technology in hopes that it will help him find his voice in the world.
< End of excerpt from the Introduction by Ido’s mother, Tracy Kedar, >
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< Excerpts from Ido’s Essays > & < My Thoughts >, by Sara Luker
29% < Ido’s Essay Excerpt > “ ‘Stims’: I am so needy to escape reality and ‘stims’ take me to another world. I feel forces like waves of sensory energy. I am bombarded with silver lights and streams of color. It’s beautiful to watch. They mesmerize me, but sometimes they scare me.”
“It’s beautiful to watch. They mesmerize me…”
< My Thoughts > “…‘stims’ take me to another world.” “It’s beautiful to watch. They mesmerize me…”
As a parent and teacher, the child can look attentive, or may be staring into space, but possibly the child is combating the sensory stimulation (‘stims’) of lights and colors which no one else can see.
Note: Some students say they see colors emitting from the bodies of others, much like those with epilepsy see an aura of colors just before they experience a seizure.
Sensory excitement can trigger stimming (hand-flapping, head-hitting, hair pulling, scratching, or biting, or whatever seems to break the circuit). Remember that this stimming action is a physiological response, not a thoughtful action.
What it looks like in the General Education Classroom – Especially sensitive students may need the computer screen or white board dimmed to help them stay with a task longer. They should also be encouraged to look away from the screen/board frequently. At home that would apply to any screens the child is using…TV, computer, iPad.
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30% < Ido’s Essay Excerpt > “I hope that writing my feelings to others will let me free myself from flapping’s hold over my response to strong feelings. People often guess that I’m uncomfortable physically and it’s really not that at all, I flap more from irritation. The “experts” mostly never get it right. They assume we are some autistic, retarded stim-machine, not a trapped thinking person who has a shitty neurological illness. They need to limit our behaviors and stop the impulsive acts, I know. Still, it would be so nice if they realized how intact our minds were.”
< My Thoughts > “…not a trapped thinking person.”
Actually, there is a study that does believe that there is a link between the ‘stimming’ symptoms of autism and thinking (cognition) ability of that person. Donohue, et al. (2012) found that ‘higher level’ forms of cognition rely upon ‘low level’ sensory processing (‘stimming’) in persons with autism. They also believe that “…these links may ultimately help to explain some of their deficits in communication and social cognition difficulties.” In other words, when ‘stimming’ isn’t allowed it may prevent or interfere with the person’s ability to communicate or recognize faces. Hmmm.
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30% < Ido’s Essay Excerpt > “Internal and external distractions – I can’t stop my senses. No one can. But mine overwhelm me. I hear my dog bark like a gunshot. My ears ring and I lose focus on my task.”
< My Thoughts > “I can’t stop my senses.”
What this looks like at home, in the community, and at school is the child will cover his or her ears and my also stim excitedly. Sometimes the stimming is a delayed reaction, but it is still tied to being startled or overwhelmed by a noise or sound.
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35% < Ido’s Essay Excerpt > “It’s hard to speak because apraxia is like a bad phone connection. I know my thoughts are getting lost on the way to my mouth. I might think about a baseball game and say something like, “cookie” or “tickle.” I get irritated by my inability to get my thoughts out. It’s the most horrible aspect of my autism. It is the loneliest thing you can imagine.”
< My Thoughts > “…apraxia is like a bad phone connection.”
Retrieved from: The ASHA Leader, September 2015, Vol. 20”18; “Autism and apraxia frequently coincide,” according to findings from the Penn State Milton S. Hershey Medical Center. Diagnostic screening determines which children have apraxia, as opposed to those who are just non-verbal, have slowly developing speech, or as a result of a head injury, brain tumor, or stroke.
“Present from birth, apraxia is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. This is NOT due to a paralysis of the speech muscles (face, tongue, and lips).” “A person with severe apraxia may need the help of alternative or additional communication methods.” There are so many kinds of augmentative communication available…from low-tech infant sign language to high-tech Smart Phone and computer apps.
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40% < Ido’s Essay Excerpt > “I don’t really understand the link between autism and high intelligence but it is obviously there. The irony is that we seem dumb but are often a lot smarter than average, but since we can’t express our thoughts we have to endure lessons in school that would bore a three year old.”
< My Thoughts > Parents and teachers should give the child the opportunity to take in the age-level or grade-level information, even if they can’t get it out. A neurologist once told me, “Get as much information in…and as much information out, as you can!” That became my motto.
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51% < Ido’s Essay Excerpt > “My proprioception is messed up. I need my eyes to tell me where my hands and legs are. This is hard because it means I have to visually pay attention to my body. It interferes with physical sports especially if I can’t see my legs. My exercising is helping me to feel my body more…more connected to my brain.”
< My Thoughts > “My proprioception is messed up.”
Proprioception is a sense of perception of the movements of one’s limbs, independent of vision. Sassano (2009)explains that… “Typically developing children generalized in both proprioceptive and visual coordinates when generating models of behavior; whereas, children with autism only generalized in proprioceptive coordinates…” In other words, vision doesn’t play a role in their movement, only their body’s sensory field tells them where their body parts are and what they are doing. That’s why Ido found that he couldn’t pull up a blanket when he was cold. (See 7%).
Most schools offer occupational therapists that can accompany students to the Physical Education class and can show the teacher and aide as how to help guide exercises. Parents can consult with a private person in this field to help give them ideas. Many families find that bringing a trampoline, swings, and floor mats into a home area can provide fun for all and give everyone more opportunity to interact. Thus, less isolation and loneliness.
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67% < Ido’s Essay Excerpt > “Some kids have kinder hearts. They say “hi” and work in groups with me and treat me well. I am starting to feel more relaxed with typical kids so mainstreaming has made me interested in expanding my world.”
< My Thoughts > “…work in groups…”
A teacher who knows his/her students can pick a working group which will work comfortably with this student. The teacher would prepare the group by role playing patience and tolerance, in order to create an understanding of what strategies may be needed. Example – The group should allow “wait time” for a response and anticipate that the student may use the letter board, or the computer to communicate with the group.
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72% < Ido’s Essay Excerpt> “The IEP Committee last week determined that I will be mainstreamed all day next year, so I will no longer be a special education student. I will be a general education student. This is amazing from a School District that once denied I could even communicate.”
< My Thoughts > “I will be a general education student.”
When a student becomes part of an inclusion program, “mainstreamed,” they may need an afterschool tutor or longer dedicated parent time at home, because of increased homework, weekly textbook chapter reading/testing, student projects, and possible sport or after-school study activities.
Keeping in mind that your student will possibly/probably take longer to do the work necessary to complete the task, allow plenty of time in order to keep frustration to a minimum.
If the student is still under and Special Education Individual Education Plan (IEP), then length of assignments, due dates, and other requirements may be adjusted as an accommodation. This doesn’t mean “dumb-down” the content, only keep expectations reasonable. Many times these students are also perfectionists and want to do and redo assignments. This can be better controlled by breaking the assignment down into parts and having completion dates for each part; while keeping the big picture in mind. Try using a chart/calendar or other visual reminder to facilitate this process.
Also note that these students are often uniquely inspired and may take a different approach to problem solving, as well as approach a topic from a different perspective. My experience has been that everyone can learn from their inspired thoughts.
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80% < Ido’s Essay Excerpt > “On to High School”
“I am not under any illusions that the school is thrilled to have a seriously disabled student. I am a challenge. I am expensive because I need an aide. But I am a student who is pioneering opportunities for the disabled too.”
< My Thoughts > “I am expensive because I need an aide.”
Unfortunately, many teachers, administrators, and support staff are under extreme pressure to perform above and beyond what they signed on for…so to speak.
Teachers deal with many classroom challenges. The pressure of districts expecting teachers to produce students with high test scores; as well as dealing with overcrowded classrooms and sometimes working with ‘underqualified’ personnel, just to name a few.
Often it is difficult to keep everyone focused, engaged and motivated. Teachers want to teach effective lessons and give every student the opportunity to have a memorable educational experience, but the reality is that in high school and middle school…every 45 minutes or so, they send in a fresh team! And, every class has its own challenging personality, energy level, and intent.
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81% < Ido’s Essay Excerpt > “I can’t deal with the one-hundred plus degree temperature… Lunch, nutrition, and P.E. are like saunas. I try to imagine swimming in an icy lake. It doesn’t help.”
< My Thoughts > “I can’t deal with the one-hundred plus degree temperature…”
Some children with autism are very sensitive to temperature, temperature change, and the sound of an air conditioner or heater going on and off can distract them terribly or send them into sensory stress overload. This is also a very hard one to catch on to and often the child doesn’t really know what is annoying them.
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< My Thoughts >
98% This book provides a comprehensive Glossary of 15 terms used in the book, and explained by Ido.
94% Plus, some Conversations on Autism between Yoram Bonneh Ph.D.(Neuro-scientist & Autism Researcher), (YB) and Ido, in the Appendix.
< Excerpt > YB: What do visual words look like? IK: They are a lightning fast swirl of lights and letters. They are my thoughts in a laser light show. Not in a straight line. They move. They stir or swirl and I strive to catch my thoughts in there.
< End of excerpts from Ido’s Essays & My Thoughts >
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References used in < My Thoughts > are:
Donohue, S., Darling, E., Mitroff, S. (2012). Links Between Multisensory Processing & Autism; Experimental Brain Research Journal; DOI 10.1007/s00221-012-3223-4.
Mukhopadhyay, S. (2013). Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language; Outskirts Press, 1st Ed.
Sassano, L. (2009). Children With Autism Rely on Proprioception During Motor Learning; Neurology Reviews V17(12):8,9.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, NY:Penguin Random House Company.
Thrum, A., Lord, C. Li-Ching, L., Newschaffer, C. (2007). Predictors of Language Acquisition in Preschool Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V.37:9.