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JB and Jamie Handley Underestimated No More

UnderestimatedAfter  more than a decade and half of treatments that failed to bring about the kind of progress Jamison Handley needed, one therapy cracked the code and imparted communication.  Think about how it must feel to be smart as a whip and yet thought of as intellectually disabled, with no way to output what's going on inside your brain. I recently heard the term "walking coma," referring to how people say that when they were in a coma, they could hear and understand everything around them, but were unable to respond. Is it any wonder at all so many of our kids are frustrated into action? Action that experts call "behavior."

Below is a review of JB and his son Jamison Handley's new book: Underestimated.

How a little-known therapy freed one teenager from autism’s prison of silence

March 15, 2021 (LifeSiteNews) — Every once in a while a story comes along that turns everything we know about something on its head. It throws a heap of understandable (but dead-wrong) assumptions and a vast library of science — thousands of psychology and medical papers — on a burn pile, and it reveals to us something utterly astonishing.

Underestimated, the book by J.B. Handley and his son Jamison, to be released by Skyhorse Publishing on March 23, is one such watershed. It is a true story that will eventually change the world of autism; the research, the medicine, the therapies, the day-to-day lives of many families — but especially, hopefully, the lives of millions of autistic children and adults. In doing so, it is not an overstatement to say that this book may just change the world. 

The hero of the story is Jamison (Jamie) — a 17-year-old nonverbal autist who is so severely affected by his disability that he’s been relegated to a “life skills” class where the focus is on teaching him to do his laundry and use a debit card and keeping him from injuring himself. His life is a tragedy to all the world, except for a few.

Jamie’s father, J.B., is one of those few. Jamie is his tragedy, and he is bent on finding his boy inside the head-banging, “stimming” teen who seems absent most of the time, vacantly tearing leaves into small bits in peaceful moments and wildly biting his arm and wailing at times for reasons that no one understands.  Read more at LifeSiteNews.

 

Comments

Hera

Morag, yes, I agree. Being stuck without a way to communicate is horrible, and deeply frustrating.
Susan Welch, thank you for your story. It is a good reminder for me that all our kids can be so different. My son is like Cia's daughter. He can speak now, but speech is still hard work for him. And writing is equally hard for him. He can understand everything, and reads reasonably well. He learns best from videos, with lots of easy to understand visual images. using that kind of learning, he can learn almost anythinng; biology, science, geography, etc..
Word processing is still very hard for him, though he is bright and capable. He does best with multiple choice questions versus sentences. it took him years to correctly spell even simple words like "and". Spell check is definitely his friend, and his sentence writing is far below his understanding His written sentences are probably about a grade 3 or grade 4 level though the answers will be correct, just very badly expressed, but he reads high school texts, and can answer questions on them.
I think it is likely that some of our kids who can't speak well are also never going to be able to spell or write well, despite understanding much more than people realize.
My son will never write a college essay, or even a good paragraph, though he can do all kinds of things with programs like photoshop.
I know that facilitated communication has a bad rap, with cases where the communiciation was made up by the interpreter.
http://teachingpsychology.weebly.com/uploads/2/5/8/0/25809801/facilitated_communication_what_harm_it_can_do.pdf
I am hoping that this program does not need "special interpreters" after it is taught, ( I realize teaching may take a long time and people may initally need a lot of help to learn it) but afterwards, can anyone understand the communications, or does it still need "specially trained interpreters"?
I believe our kids have so much more potential than people realize, and have an absolute right to make sure it is their voice that is being heard.

I think if there is any question of interpreting, then basic testing is appropriate. You are not testing the person with autism, you are testing the interpreter, which is valid and necessary. It can be as simple as telling the interpreter that you think apple pies are your son's favorite ( knowing he hates apple and love pumpkin) and then asking the interpreter to check which pie he likes the best, or which pie he wants for supper tonight. If the answer comes up apple, you know the results are interpreter driven. Pumpkin, and it is true communication. Anyone with the language ability to write college essays can answer this kind of thing, easily and accurately.
I know all our kids have such different skill sets, that what works for one, may not work at all for another.
( With our son, sign language was the starting point for communication. Speech came much later, and in single words. Now he sometimes surprises me with some of the high level vocab words he uses, but he still prefers to talk to strangers mainly with greetings and yes/no answers. They can't always understand other words he uses, which also does not help..)
Hope this is useful to someone.
Also, Cia, the Atlantic had an article on helping long Covid haulers with breathing techniques to help with carbon dioxide retention. I thought you might be interested in it?

Morag

That is totally fasinating good news. This is a very under researched area.
Working with fab people with cerebral palsy ,seen it so often, people can strugle to communcate what they want /need to say and the words come across as all gobbledegoop,but if they get exasperated frustated or annoyed ,the spoken words are clear as a bell , about this, that, and the next thing!
Same situation for people who have had strokes. Communication wires get all mixed up in their head /
but can improve as well, with time and specific encouragement!
How long would it take you? .
If you were given tea with milk and sugar, bread ,butter and jam ,and the person sitting next to you had what you wanted for breakfast ie Black coffee ,toast, butter and marmalade, and no one even asked or cared what preference you had ?
It would take me more than three days ,but certainly less than seven to get stamped labeled and branded as .Violent tendencies towards breakfast items ,breakable plates and cups deliberately skelped onto the floor and smashed !

Patrick

Actually, I would have thought traditional autism therapy would be torture for my son....he could not. That’s all there was to it. With his tics they had him on 3 drugs that put him to sleep....falling asleep on his bus at age 4. Thankfully at age 6 the nightmare was over. He had MTHFR mutation.
I remember a tortured girl trying to look at me in a ball play pit, but for all her efforts, she could not see my face. Do:

Patrick

It turns out that oxygen is very important!!!

Patrick

Yes, and after my flu shot while pregnant I could not see where I focused. For example, I could not read the teleprompter. I thought I would never see my son’s face. My sister said eat and drink and sleep and I was okay. It turns out that is s common side effect of mercury poisoning.
My baby was severely injured
By the grace of God he is “okay “.

susan welch

I have ordered JB's book and am very much looking forward to reading it.

Apologies if I have related my experience with my non verbal grandson before, but I think it is relevant. I live a couple of hundred miles away from my grandson who was, at the time 25. He absolutely loves the Beano comic and, as well as the annual every Christmas, I have a box of old comics from when my sons were young. Whenever I see him and every birthday I give him a few.

I had read and seen letter boards on line and had made one for when he visited me a couple of years ago. He absolutely loves the county I live in and had visited many places here before his visit. After the usual greetings, I produced the letter board, (I had hidden the comics), and asked him what was the favourite place he had visited on his holiday. He immediately spelt out BEANO, without any hesitation. It was funny and I could imagine he was thinking 'Sod the pleasantries, where are the Beanos?'

His mother had told me his favourite cake and I had one ready. When I asked him what his favourite cake is, again without hesitation, he spelt out CHOCOLATE.

Can't wait to read JBs book and pass it on to his parents. Hopefully after reading it, they will be able to help him communicate more.

Cia

JB,

I didn’t know that facilitated communication usually involves someone supporting the hand of the impaired person. I just learned a little more about the subject from your post and here:

https://www.google.com/amp/s/www.aptus-slt.com/amp/aac-in-aphasia

I just read here that one problem with another method, augmentative communication, is that those with aphasia, stroke-like brain damage from vaccines, like my daughter, often no longer have the inborn grammatical categories and structures normally activated when the child hears his native language used, don’t have the structures of language itself, so the devices aren’t of much help. She made great progress studying English as a Second Language, building neural circuits to replace the ones destroyed, from the ground up, using Cambridge University textbooks for teaching English to foreign students. They have excellent textbooks for all levels, from preschool to adults. But speech is still difficult for her. She tries hard to answer questions or echo statements using the same structures. Yesterday she said I like sweet things like cookies, cake, or ice cream better than salty things. Today she said I liked Sea Trek Swim with Stingrays the best at Xcaret. And I’d rather live in a tropical climate than a temperate one. What about you? Eight years ago when we started ESL at home, she couldn’t construct sentences at all. I hope she continues making progress, but she’s accomplished a lot. Someone a month ago suggested her using an augmentative device, but I think that person doesn’t understand that she’s progressed way beyond a picture or word device. I’d be happy to find a method which could help her advance further, but I don’t know what it would be. She’s done with homeschooling and says she’s fine the way she is. I have long Covid and for several weeks have had an exacerbation of MS. She just put away all the groceries, will take the trash bags out to the curb tonight for trash pickup, made chicken curry completely independently Sunday, will make Lucky Charm bars like Rice Krispy Treats tomorrow, and feeds our two cats and cleans their litter boxes every day with no reminders. We’ll play Sequence or Sleeping Queens, Uno or Skip Bo, later; she remembers the rules better than I do. She takes whimsical pictures with her phone that show a sense of humor. She’s a talented artist. She’s super just the way she is. But she’d be happier if she had greater use of language. She’s trying.

JB Handley

S2C is NOT "facilitated communication" a term that refers to communication where a partner often places their hand on the communicator's hand and moves them a round a keyboard or letterboard. With S2C, there is prompting in the early days through voice and hand signals, and that prompting is faded as quickly as appropriate. Communication partners NEVER touch the speller or move their hands in any way. Many S2C spellers end up as independent keyboarders, and credit the thoughtful fading of prompts with helping them to develop independent communication. Labeling S2C facilitated communication is both inaccurate and a huge disservice to the many fluent spellers in our world. JB Handley

Cia

Jeff Bolz,

I was wondering that myself. It seems to be a method of facilitated communication, Spelling to Communicate. The impaired person uses his intact gross motor skills to point at letters on a board to spell out words. If it goes beyond this, I hope that someone will explain it.

greyone

just listened to this interview with J B Handley:
https://autism-parenting-secrets.simplecast.com/episodes/your-child-understands-everything
references some of his and Jamison's journey with some interesting details.

Jeff Bolz

So what was the therapy?

Anonymous poster

Letter to AOA
I was violently abused, face down or arm restrained, screamed at (oftentimes in public in the car), had soapy water poured into my eye, forcibly had my hair cleaned in the sink, spanked, smacked, punched, forced to eat soap, blamed, threatened with physical abuse/having my personal belongings all taken away, and mocked by my mother since I was a toddler.

I was also given numerous toxic vaccines since I was a baby (less than 2 months old), prone restrained, gestured at by, laughed at by, coerced, blamed, mocked, force drugged, given rude remarks (“acting like a 2-year old” by one so called doctor who raped restrained assaulted threatened me with more restraints) and put in seclusion and traumatic therapy sessions in NY and FL by “doctors” psych ward and schools.

When I tell my mother I never deserved any injections (vaccines psych injections or otherwise), restraints, being coerced, prone restrained and screamed at and threatened by doctors (and even my own mother), given toxic mind altering drugs, etc, she either laughs or talks about me being a “threat” or “danger” to excuse poisoning me into autism and aggression via aluminum vaccine adjuvants + extreme chronic child abuse since I was an infant, she says it’s me “choosing to be bad” and she says it’s “all my fault”, she excuses psych restraints and violence and the toxic adjuvants used in vaccines, as if vaccine injured kids and teens could supposedly magically “choose not to be bad” when adjuvants control their minds.

She basically shows no or very little remorse for disabled people being made homeless, being restrained, hurt and abused inside psych wards, disabled people in poverty, disabled people who are unemployable, etc.

Also I request AOA to stop supporting Del Bigtree and all “safer vax” people who are just more provax shills in disguise. I was given a so called “safer smaller” vaccine schedule and I still became autistic and learning impaired. Given encephalitis by DTAP instead of MMR.

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