17 years ago, after my nonverbal 3 year old autistic son exhibited signs of being able to spell using his letter magnets, we bought him a talking dictionary off of Amazon. It opened up a whole new world of communication, and we learned he could speak in complete sentences! He did finally master his speaking voice at almost 8 years old, but for five years we were blessed to be able to get to know our son through the gift of spelling. ❤️
I cried on every page and I don’t know JB or Jamie personally. It’s one of the most moving, powerful, beautiful books I’ve ever read. Cant wait for the movie
I can't believe I just found this article. I'm sorry, we never had our planned talk, don't know what happened there but would like to try again.
Thanks for mentioning my dear friend, Liam. Yes, I know exactly what you mean, over Covid I've often wanted to hear his thoughts which no doubt would be spot-on and hilarious.
There's so much to unpack here, I will have to private message you soon to get into it. But I just wish to say, I appreciate you so much. - April
In order to use s2c, one must first know howo spell the words that they want to say.
In order to know how to spell, one must know how to read. Are there any of you that have taught someone to read that SEEMS to function at a 14 month old level?
BTW, JB did not teach Jamie to read. No one did. He already knew from being an intelligent teen. There is an issue of not being able to direct his eyes where they want to go, so he would not sit and read a 10pt font book like you and I, but he could absolutely read enlarged letters despite the fact no one taught him.
Have you read “Underestimated”? It tells about Jamie’s journey. His family didn’t think he could read or had much intelligence, but they found out he had average or above average intelligence. Definitely worth reading! I gave my copy to a friend whose son is a non-speaker.
That's a good question. No one seems to know the cause of echolalia. The words are clearly there, Cade's repetitive speech was nearly perfect. So not cognitive. I don't know the cause. It's as if the echo doesn't need the motor planning.
Jan 17, 2023·edited Jan 17, 2023Liked by Levi Quackenboss
We curbed our son’s echolalia via biomedical interventions including methylation & mitochondrial support. OCD at 11-12 is our latest manifestation & focusing on his immune response and strep (PANDAS) has helped. IVIG’s next.
Our son at 3 to 5 would ‘stim’ staring and spinning Thomas the train’s wheels. Now he’s letterboarding sentences for first time. Just a few months ago, he was cussing in class. Turns out we had to boost our mito support & switched to mono & medium-saturated keto diet. Energy gaps induce anxiety which cascades.
In our experience, it’s an energy/immune gap which drive it in part. Whatever you do, don’t give up. Attend conferences on/offline, try & treat negative outcomes as proof you’re doing something to alter yours child’s Epigenetics. From that, positive proof & results arise.
No because the area of the brain that is responsible for echolalia and scripted speech is entirely different from the area that governs novel speech in real time. My son will script full sentences non stop and then spell something COMPLETELY DIFFERENT. He calls himself an “unreliable speaker” in that his speech is unreliable. He spells all the time “please don’t listen to my mouth. I can’t control what comes out of it”
I watched a letterboard demonstration last June. The speller said to me, “I love you” and then proceeded to type ‘of course I don’t love you, I just met you.’ Such a disconnect. Must be such a great relief to finally have the ability to clarify one’s truth…
Thank you for explaining unreliable speakers. I have heard that info from others, as well. In addition, these individuals also explain that often their bodies also do things that they don't want them to do.
Great question, Laura. As we learn more about autistic apraxia/dyspraxia, and listen to actually autistic people with this lived experience, it’s becoming evident that much echolalia (which may be used for communicative intent when reliable speech is unavailable) is largely unreliable and (frustratingly) does not match the individuals true intention. This often leads to emotional dysregulation, misunderstanding, and problematic motor loops. These loops often disguise the individual’s true intelligence/language abilities and leads to repetitive teaching strategies and limited opportunities for meaningful learning and engagement.
It’s important to presume competence and expect that there is more someone is trying to/needing to say. (“More alike than different.”) Unreliable speakers must have access to a method of communication, like S2C, that addresses the motor and regulation needs. Excited for this film to reveal what many of us have been seeing for years now.
Absolutely. Chelation removes recently acquired ead from the body. Lead poisoning symptoms are so very similar to symptoms of autism that I truly believe at least a third of all dx'd "asd" actually have lead poisoning.
Also here's an amazing fact you'll want to Google. When a woman who had lead poisoning at any time, even during infancy, becomes pregnant, not only does the lead leach out of her bones and repoison/ redamage her, but also causes lead poisoning in her unborn baby. If the baby is a girl, the cycle continues. Wouldn't that explain the leaps of the autism in this world?
17 years ago, after my nonverbal 3 year old autistic son exhibited signs of being able to spell using his letter magnets, we bought him a talking dictionary off of Amazon. It opened up a whole new world of communication, and we learned he could speak in complete sentences! He did finally master his speaking voice at almost 8 years old, but for five years we were blessed to be able to get to know our son through the gift of spelling. ❤️
What an incredible story.
My son is a speller. Thank you for this beautiful review and for believing in them ❤️
I cried on every page and I don’t know JB or Jamie personally. It’s one of the most moving, powerful, beautiful books I’ve ever read. Cant wait for the movie
Mind and heart blown.
My daughter is a S2C practitioner and I have witnesses the difference it is making. Truly miraculous.
Thank you for this post. It is heartbreaking and heartwarming at the same time.
I can't believe I just found this article. I'm sorry, we never had our planned talk, don't know what happened there but would like to try again.
Thanks for mentioning my dear friend, Liam. Yes, I know exactly what you mean, over Covid I've often wanted to hear his thoughts which no doubt would be spot-on and hilarious.
There's so much to unpack here, I will have to private message you soon to get into it. But I just wish to say, I appreciate you so much. - April
Aw, thanks, April. You can email me at leviquackenboss@substack.com when you're ready. I hope your son is doing well!
If only anyone could teach my son to read.
In order to use s2c, one must first know howo spell the words that they want to say.
In order to know how to spell, one must know how to read. Are there any of you that have taught someone to read that SEEMS to function at a 14 month old level?
How old is your son?
BTW, JB did not teach Jamie to read. No one did. He already knew from being an intelligent teen. There is an issue of not being able to direct his eyes where they want to go, so he would not sit and read a 10pt font book like you and I, but he could absolutely read enlarged letters despite the fact no one taught him.
Try calling Lenae Crandall @Heed - they work with so many kids others quit on or refuse to work with… www.heedrpm.com
Have you read “Underestimated”? It tells about Jamie’s journey. His family didn’t think he could read or had much intelligence, but they found out he had average or above average intelligence. Definitely worth reading! I gave my copy to a friend whose son is a non-speaker.
Every person deserves to be heard. We need to use every opportunity to listen.
Levi Quackenboss
shared on Notes, Gab, Facebook
nice essay
I agree with most of this, but if someone has echolalia wouldn't that be a language problem instead of a physical problem?
That's a good question. No one seems to know the cause of echolalia. The words are clearly there, Cade's repetitive speech was nearly perfect. So not cognitive. I don't know the cause. It's as if the echo doesn't need the motor planning.
We curbed our son’s echolalia via biomedical interventions including methylation & mitochondrial support. OCD at 11-12 is our latest manifestation & focusing on his immune response and strep (PANDAS) has helped. IVIG’s next.
Our son at 3 to 5 would ‘stim’ staring and spinning Thomas the train’s wheels. Now he’s letterboarding sentences for first time. Just a few months ago, he was cussing in class. Turns out we had to boost our mito support & switched to mono & medium-saturated keto diet. Energy gaps induce anxiety which cascades.
In our experience, it’s an energy/immune gap which drive it in part. Whatever you do, don’t give up. Attend conferences on/offline, try & treat negative outcomes as proof you’re doing something to alter yours child’s Epigenetics. From that, positive proof & results arise.
No because the area of the brain that is responsible for echolalia and scripted speech is entirely different from the area that governs novel speech in real time. My son will script full sentences non stop and then spell something COMPLETELY DIFFERENT. He calls himself an “unreliable speaker” in that his speech is unreliable. He spells all the time “please don’t listen to my mouth. I can’t control what comes out of it”
This is fascinating. It would be a documentary on its own.
I watched a letterboard demonstration last June. The speller said to me, “I love you” and then proceeded to type ‘of course I don’t love you, I just met you.’ Such a disconnect. Must be such a great relief to finally have the ability to clarify one’s truth…
Thank you for explaining unreliable speakers. I have heard that info from others, as well. In addition, these individuals also explain that often their bodies also do things that they don't want them to do.
My son who started S2C almost 2 years ago calls it mouth noise and says that he can’t control what comes out of his mouth and can’t stop it.
Great question, Laura. As we learn more about autistic apraxia/dyspraxia, and listen to actually autistic people with this lived experience, it’s becoming evident that much echolalia (which may be used for communicative intent when reliable speech is unavailable) is largely unreliable and (frustratingly) does not match the individuals true intention. This often leads to emotional dysregulation, misunderstanding, and problematic motor loops. These loops often disguise the individual’s true intelligence/language abilities and leads to repetitive teaching strategies and limited opportunities for meaningful learning and engagement.
It’s important to presume competence and expect that there is more someone is trying to/needing to say. (“More alike than different.”) Unreliable speakers must have access to a method of communication, like S2C, that addresses the motor and regulation needs. Excited for this film to reveal what many of us have been seeing for years now.
Absolutely. Chelation removes recently acquired ead from the body. Lead poisoning symptoms are so very similar to symptoms of autism that I truly believe at least a third of all dx'd "asd" actually have lead poisoning.
Also here's an amazing fact you'll want to Google. When a woman who had lead poisoning at any time, even during infancy, becomes pregnant, not only does the lead leach out of her bones and repoison/ redamage her, but also causes lead poisoning in her unborn baby. If the baby is a girl, the cycle continues. Wouldn't that explain the leaps of the autism in this world?