It's Time to Believe Autism Mothers Too
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Sabotage

Talk to meBy Cathy Jameson

Ronan started speech therapy again.  We’d ditched it years ago after progress had plateaued.  That, and the onset of major transition issues Ronan had going into and out of the building, prevented him from gaining anything useful from his sessions.  He would get so frustrated.  His therapists and I would, too.  We all needed a break.  That break lasted over 2 years.  When I learned that a center we got to for other services was adding speech therapy, I thought it was time to explore it again.  Ronan’s six weeks into it now and is responding well. 

Since Ronan lost his voice post vaccination, I have been hell-bent on bringing it back.  He’s retained vocalizations, but the ability to say clear, concise words has never returned.  Before I got my hopes up too high this time going into speech therapy, I reminded myself it was actually Speech and Language Therapy.  It wasn’t just speech that he’d be working on.  He and his new therapists would be working on language skills as well. 

Language includes the study of what words mean, how to make new words, and how to use words together.  Ronan has that down pat but in a different form – words in print.  Ronan can identify words.  He can point to the sentence I’ve just read aloud.  He can type.  He can maneuver a computer keyboard and a tee-tiny keyboard on a small cell phone.  His sentence structure, syntax and punctuation skills are still rudimentary, but his message is always clear.  Just today, he typed (in a series of prompts) “Lock door ipad” on his voice output device indicating that he wanted me to open the door.  The door was closed.  Behind it was his iPad.  It needed to charge.  If he saw the iPad, he’d take it as soon as he saw that it had 1% battery power.  Since he was hoping to watch some Youtube videos, I wanted to charge it a little bit longer.  Ronan didn’t want to wait, but he did after I wrote my response, “The iPad is charging.  Play something else instead, please.”  Easily, I could’ve said that, but lately, he’s responding to directions and requests better when they are written. 

Ronan screens

After Ronan lost his voice, Ronan’s speech did not quickly come back like I’d always hoped and prayed that it would.  It still hasn’t.  So he found other ways to create meaningful communication opportunities with us.  Our new speech therapist saw that during the initial evaluation and was on the same page we were wanting to further develop those opportunities, especially with the voice output device.  At least I thought she was on board until she asked me to sabotage Ronan. 

Sabotage? 

Hearing that word didn’t conjure up a warm, fuzzy feeling.  I thought the exact opposite.  Sabotage was what an overbearing, oppressive tormentor uses on its victims.  And this is the approach this new gal wanted to use with my kid?  What an awful suggestion! 

I couldn’t help think of how many times I’ve been sabotaged for my belief in how Ronan lost his voice.  It was post vaccination that he lost skills, including the ability to speak.  It was post vaccination that he started to get very sick.  It was post vaccination that I was forced to voice my concerns.  Those who could have helped us didn’t.  Those who should’ve helped us wouldn’t.  The more I had to fight for my son, the more I realized we were not alone.  Other families were cluing in and also raising their concerns.  The more we all spoke up, the more we all were sabotaged.  That sort of response continues today. 

The media sabotages us with what they want us to believe – that vaccines are only safe and effective and absolutely necessary to ward off disease.  Doctors want us to think that, too, and belittle parents who question their fear-mongering tactics.  Those promoting vaccines sabotage us for speaking out and resort to calling us names.  I’m very familiar with the practice of sabotage, and the speech therapist could see I was less than impressed with her cheery suggestion about using it on my child. 

“Oh, it’s not like it sounds.  I think this (handout) will give you a better idea.  But if it’s not what you want to do, of course, we can look for another approach.” 

I appreciated that she picked up on my non-verbal language.  She could see that I was skeptical about her proposal.  Since Ronan hadn’t been in this therapy for such a long time, I held off on forming an opinion until I had time to digest the information she asked me to read.  Here’s an abbreviated description of what I learned:

Sabotage is a language stimulation tool.

It can be used across many environments. 

At home, the parent is typically the main communication partner.  The parent – not the child – takes control over the communication situation. 

In doing that, it gives the (limited speech/non-verbal) child “the need to speak”.

If the child wants or needs something, they have to ask for it.

Conversely, if the child wants something to stop, they have to indicate that they don’t like whatever it is that is bothering them.

Teaching the child to “use their words” is the main focus. 

But since the child has trouble expressing themselves effectively, sabotage can lead to bouts of frustration…

Ronan already deals with bouts of frustration.  He’s non-verbal living in a very verbal world.  He’s unable to do many simple tasks for himself or by himself.  Almost 15-years old and dependent on others for the majority of his day, he’s already dealt Ronan doorwith more than an average kid does.  Throw in the medical issues, and he’s had to handle much more than what an average adult probably does, too.  To ask him to continue to be frustrated didn’t sit well with me, but as I read the handout, I could now see the therapist’s point.  If done correctly, sabotage can draw communication out of the child.  I use that sort of strategy already with Ronan and have been since he lost speech.  I would just never think to use the word sabotage to describe it. 

I am sad when I think about Ronan not being able to talk.  Early speech was there.  Early language was developing, too.  Before silence fell over him, he was so babbly.  But typical babbling did not lead to the formation of clear, intelligible words.  Stringing those words into meaningful sentences didn’t happen either.  Knowing that he wants to share wants, needs, and ideas with us, though, has pushed us to provide countless opportunities toward communication.  We’ve done that by peppering his environment with print-rich products.  We’ve labeled the house and everything inside it with index cards.  We’ve created and bought letter boards.  We’ve explored, and are still exploring, Rapid Prompt Method (RPM).  We’ve used Ronan’s voice output device alongside him, too.  And now, we’ve added Speech and Language Therapy back on his schedule. 

I’ll still always hope to hear Ronan’s sweet, husky voice again, but until that happens, I will continue to flood his environment with other means of communication.  I won’t be using scare tactics or fear mongering while working with him.  The strategy I’ll use, because it’s the one that Ronan thrives on, is fueled with lots of love, with tons encouragement, and with endless hope.  It’s one that I thrive on, too. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

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Morag

Great article Cathy.Parents already are excellent experts their own"SELFIES"in creating the supportive enviroment for sucessful learning outcomes ie. AIM [1] I will continue to flood Ronan's enviroment with other means of communication. AIM [2] Method used. All carrot/no stick tactics required, necessary, or tolerated,for Thrive Strategy of Lots of Love ,Tons of Encouragement and with endless HOPE . As for ,Those who could have helped us didn't .Those who should have helped us would'nt .
That is a sore and hard huge disappointment to get through especially from the professional sector.
Sound the training deficiency alarm or have they got issues ?have they got problems? are they getting Hen-pecked at work or something ? Sensory impediment,difficulty,or impairment is not a bleak or barren landscape . Families can communicate and connect differently and creatively through thinking beyond current clinical limits and boundaries ,despite barriers of cinderella service provision /funding . Can cairn terriers learn to understand/respond to basic makaton signs ,"Oh yes they do" and see "Friends Forever1 Dog Befriends little Boy With Down Syndrome - youtube "Persistent communication in motion" also see On This Day -Helen Keller comprehends the word "Water" and [ PDF ] OPTIMISM-iETERNA An essay by Helen Kellar 1903 .

Alexandra

Kyle's Mom--I've been giving my son Behavior Balance (he will be 16 later this month), that has B6, B9, and B12. I've noticed his language improving. Pronouns are coming along--instead of referring to himself in the third person, he's referring to himself as "I" and "me" more.

Cathy Jameson

Thank you, thank you! What great suggestions!

Ronan can hum - so we hum along with him and also sing the song for him if we recognize it. We've always done "fill ins" for songs hoping we'll hear the word we've omitted, for prayers we know he knows (he can sometimes say Amen), and for favorite lines in his books (especially the Dr. Seuss stories he loves). With the output device, I ask Ronan to fill in or answer open-ended questions about topics he's learning or is familiar with. We use it for every day events, too. Last week, while making breakfast, I asked Ronan how many sausages he wanted. He typed 1. I said, Only one? He deleted the 1 and wrote 2. I asked are you sure? He repeated "2" and also signed yes. It was a great exchange.

I will check out the other links readers have left for me. Thanks so much. xo, Cathy

cherry Misra

@ Researcher, Thankyou for your comment on singing and its use for returning speech. I ran a nursery school for 45 years and always wondered what the function of singing was in human development.

cherry Misra

@ Kyle's mom- This is very interesting to me. My husband has Alzheimers- also known as autism of the elderly- obviously due to the mercury amalgams in his teeth-- and the supplements that benefit him the most are the B vitamins and injections of B 12 (Actually, he takes an injection of Neurobion, a mixture of B 3, B 6 and B 12 (by Merck) and there is a noticeable improvement in him 4 days later. He also takes capsules of B vitamins. I do not know why we dont hear of anyone using Neurobion for autism in the U.S. In fact , I have never heard the word Neurobion, although the product is made by Merck. We tried Methyl B 12 alone by injection, and it did not seem to have any noticeable effect, so we gave it up and went back to Neurobion.

Kyles mom

Swinging and singing on a swing plus all the B vitamins esp methyl B-12 caused language for my son

Sam

@Cathy
Have you tried the Nemechek Protocol? Dr. Nemechek's blog -
https://www.nemechekconsultativemedicine.com/blog/reversing-autism-2017/
There's a support group on Facebook for The Nemechek Protocol for Autism. Many stories of recovery there, especially speech.

Debbie

LIke Researcher - we had great results with music therapy and scientific sound. We saw Dr. Thompson in person and he specially created sound for us which is/was amazing. We still listen to it and I and my speech therapist credit it with speech/language acceleration. https://scientificsounds.com/

I just saw that he added an autism one. We never did that one, but had great results with the custom CDs and memory and learning.

Margaret Jaeger

Dear Cathy, these two sentences should be boldly written on anything concerning Autism, victims....of vaccine adversity....from your article...

Those who could have helped us didn’t. Those who should’ve helped us wouldn’t.

It's our theme. Thank you.

(From grandma peg...who has also been there and done that with the many therapies for this new Regressive Autism... with the parents of my grandson).

Researcher

Cathy, does your speech therapist do any singing with Ronan? The part of the brain responsible for singing is separate from the part responsible for speech, even though both use words. Often, people who lose speech from brain damage can relearn using singing. It's fascinating.

Can he hum a tune?

If there is a song he likes to sing, sing it for him, and leave out the last word. He may be able to him the pitch--or even sing the word.

A friend of mine had a traumatic brain injury, and could not speak clearly, even after months of therapy --but could enumerate perfectly clearly while singing.

This is also the kind of therapy they did with Gabi Giffords.

Chris W. Houghton

For Cathy Jameson,

Have you looked into the work of Dr. Natasha Campbell-McBride? Here's her background:

http://www.doctor-natasha.com/dr-natasha.php

She has had some good results in cases of Autism. Her belief is that there are problems that are caused in the gut that can cause ASD and related problems. She has a protocol she follows in these cases and it has to do with clearing out the gut and beginning again with good bacteria. Some parents have said that they got wonderful results using her methods, and they are not painful or invasive. They have said that their children have reversed their Autism to a good degree.

She is a Director on the Advisory Board of The Weston A Price Foundation.

Good Luck,
Chris W. Houghton
email: flamed@optonline.net

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