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It's great that you know that Jon has the ability to say a few words and I can understand your desire for him pursue and add on those words.
My girl says no words at all in all settings... However I haven't given up and I will not dare say she will never talk.
A speech therapist was telling me something quite sad, that she was aware of parents who had an adult daughter with Autism who was nonverbal... Well her mother died of cancer and the father was not really involved in the care giving of their daughter. Well, over time the daughter had to actually work hard in getting her needs and wants met and she ended up saying a few words. It was since established that the Mother did absolutely everything for her daughter with no prompting for independence, self care and communication. The daughter learned that she got everything she wanted with no effort.

I would be rolling in my grave if she did that to me...
I'm like a seargant major at times and I have to be giving her tough love, otherwise if she could get anything easy, she would not have quality of life.
 

KarenB

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Funny -- those are usually the words Jon will say -- like "eat!" or "cook" if he's hungry. Functional words.
 

Ruth

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I have a son who had that problem with speech. When the teachers told me that he would never read or speak very much, I decided that I would be his teacher.

When he came home from school, I taught him at home for 4 hours each day. I would take him to the library and find a fun book to read, like Curious George and I found a lot of other books that are fun for children. When he didn't know what a word meant, I would take him to the store and show it to him. One was beet, so I took him to the store and showed him what a beet was.

There are a lot of electronic gadgets that help children to read,as well.

It was a full time job and my son is now in his 30's and he can read the Bible and do research on his own.

If I had listened to the teachers, he never would have learned. You are his best teacher.
 

Zoe

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It's not that I'm against augmentative language devices -- it's that it's the only thing that he's being trained to do. They're not doing anything to help him regain his lost speech. If you had a stroke victim, you would work with that person to regain speech. But they seem to think that Jon ever speaking again is a hopeless case. They said they never hear him saying anything at school -- until the day I walked in and he said about 5 or 6 words within 5 minutes.

Jon has learned the PECS system, and we use that at home and school. Except that every once in a while (only at home) he'll say the word instead of reaching for the picture cue. He was doing well on a Big Mac for awhile, but then he kept pushing it off the table on the floor, so they're not using that at school anymore.
Karen,

I am a stroke victim, and I got no stroke rehab because my condition was diagnosed as terminal. The state insurance would not pay for rehab, physical or speech, because they considered it a waste of money to rehab someone who was just going to have additional strokes and die anyway.

Thirty-plus years later, I still have quite severe difficulty understanding speech. This is mostly due to my very slow speech processing. Also, I am about 40% deaf. My optic nerve on the left side is partially paralyzed so my eyes do not focus in unison.

My hearing is like my vision, sound is not processed in a synchronized way, so I can no longer do a lot of public or group activities, normal speech is often just a jumble of cacophonous noise to me! As far as speaking goes, there are now no signs of speech impairment in normal conversations and I score way above average on verbal skills testing.

About Jon's speech; as much as you have done to work with Jon's seizures, there are many options for working with his speech, and many you can invent yourself with all your insight into his difficulties.

I developed some strategies that helped me relearn to speak in complete sentences and to pronounce words correctly at a normal rate of speed. I don't want to bore everyone with my travails, so just p.m. me if you want me to explain, it is simple and may work for Jon as well. It may be to his advantage that he was bilingual, gives you more avenues to explore.

Singing has been getting more press the past few years as a way of retraining speech after strokes. Perhaps this strategy will work for Jon as well.

My niece is pretty severely disabled from Down's Syndrome. My sister sent me a video last year of her singing and playing piano. My sister says the piano lessons are triggering something that is also improving her speech (rhythm, coordination?).

Perhaps singing, in both his languages, will trigger something for Jon in a similar way. Here are a few links about it:


From Singing to Speaking: It's Amazing To See
www.strokeassociation.org/.../From-Sin...
The American Stroke Association
Mar 6, 2015 - Often stroke survivors with aphasia cannot produce meaningful speech, but they can sing. A speech therapist and two neuroscientists ..
http://www.strokeassociation.org/STROKEORG/LifeAfterStroke/RegainingIndependence/CommunicationChallenges/From-Singing-to-Speaking-Its-Amazing-To-See_UCM_310600_Article.jsp


Guest Post: Makes Me Want To Sing – Improving Your Child's
www.smartspeechtherapy.com/guest-post-makes-me-want-to-sing-impro...
Jan 17, 2014 - Today's guest post on how to use music to improve children's speech language abilities comes from Rachel Arntson, M.S., CCC-SLP of the Talk ...
http://www.smartspeechtherapy.com/guest-post-makes-me-want-to-sing-improving-your-childs-speech-and-language-skills-through-music/



Singing Therapy Helps Stroke Patients Speak Again : Shots ...
www.npr.org/.../singing-therapy-helps-stroke-patients-speak-againNPR
Dec 26, 2011 - They call it melodic intonation therapy. Post-stroke patients are assigned to a form of conventional speech therapy or to singing therapy.

https://www.google.com/#q=singing and speech therapy


What if you sang or played songs to him in either or both of his languages to see if he responds or tries to sing along? There are lots of possibilities.

Also, consider the effects of the meds, like metabolic acidosis, and any food sensitivities. Just as they can trigger seizures, they may also be affecting his ability to speak. You know he can speak, you're hearing him do so. There's no one who can say with certainty that he cannot relearn or regain more of his speech skills or that there is a limit on how much he can improve. Don't forget to have faith in your "mother's intuition," you have a lot more insight than probably anyone else on the planet.
 

Zoe

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I wonder if this indicates that people with seizures should ingest more protein or if perhaps they are somehow deficient in processing/absorbing the protein they do ingest. Hmm.

That's a really good book. It sort of started me off on this path. I think I'll go back and read it again.
I have re-read sections of it so many times I have worn out several copies of the book!
 

Ruth

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Funny -- those are usually the words Jon will say -- like "eat!" or "cook" if he's hungry. Functional words.
What I did when my son just used one word, like eat or cook, I would Ask him to say ' please let's eat" or" mommy please cook me something.".

That way in a while he will learn more words.

I know you are doing your best to raise Jon. It will be difficult and there will be setbacks. When those happen, just go on.I would take my son for walks everyday. When I saw a parked car, I would sAy, 'car'. When he finally said 'car', then I would add, 'it is A brown car. I taught him his colors that way. He was interested in cars. I mAde it conversational so he did not know that he was learning. :hugs:
 
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KarenB

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Well, I do appreciate all the advice. I can definitely elicit a lot more speech from Jon than his therapists can. We do a lot of reading every day (reading to him) -- he has a pretty vast library (even though 11, he still prefers Dr. Seuss and The Little Red Hen and books like that, with lots of repetition and rhyme and rhythm). So that's part of his day at home, and his teacher also made it a part of his day at school. I'm scheduling a meeting with his new teacher to check out her classroom library before school starts, and will augment it if necessary. We also use a lot of music -- he listens to his Mozart, etc. before going to bed and upon arising, but also just lots of little songs -- we have a going to the potty song, and little songs for various things during the day. His former teacher was really good with this as well. Even though 11, he's still enjoying preschooler stuff like nursery rhymes and children's songs, so he has some DVDs that he enjoys watching and dancing along to. Jon seems to be most verbal when music and/or motion is involved, and also early in the morning.

There's a technique that Beth Israel/Harvard Med School is developing - Auditory-Motor Mapping Training (AMMT) - using chanting/singing along with motor movements (tapping tuned drums) to successfully elicit speech from autistic nonverbal children. I think this would work well with Jon, and am trying to duplicate it at home, but not sure if I am doing it correctly.
http://www.bidmc.org/News/InResearch/2011/October/MusicTreatsAutism.aspx
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4430083/
 

Ruth

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You can tell if it is working by well Jon learns. It has to be fun for him. Mozart is a good choice. I loved Mozart from the time I was a child. Try others in the classical group. That will give him some variety. He will let you know which ones he likes by his response.
 

KarenB

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Yes, we do change out the classical music - he has several Mozart videos & CDs and also has Beethoven's Ode to Joy, Vivaldi 4 seasons, etc. that he enjoys.
 

Zoe

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Well, I do appreciate all the advice. I can definitely elicit a lot more speech from Jon than his therapists can. We do a lot of reading every day (reading to him) -- he has a pretty vast library (even though 11, he still prefers Dr. Seuss and The Little Red Hen and books like that, with lots of repetition and rhyme and rhythm). So that's part of his day at home, and his teacher also made it a part of his day at school. I'm scheduling a meeting with his new teacher to check out her classroom library before school starts, and will augment it if necessary. We also use a lot of music -- he listens to his Mozart, etc. before going to bed and upon arising, but also just lots of little songs -- we have a going to the potty song, and little songs for various things during the day. His former teacher was really good with this as well. Even though 11, he's still enjoying preschooler stuff like nursery rhymes and children's songs, so he has some DVDs that he enjoys watching and dancing along to. Jon seems to be most verbal when music and/or motion is involved, and also early in the morning.

There's a technique that Beth Israel/Harvard Med School is developing - Auditory-Motor Mapping Training (AMMT) - using chanting/singing along with motor movements (tapping tuned drums) to successfully elicit speech from autistic nonverbal children. I think this would work well with Jon, and am trying to duplicate it at home, but not sure if I am doing it correctly.
http://www.bidmc.org/News/InResearch/2011/October/MusicTreatsAutism.aspx
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4430083/

Surely this approach can be adapted to best fit the individual .
 

Ruth

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Surely this approach can be adapted to best fit the individual .
Zoe, I was able to change to my children's needs by how they reacted to something I tried.

Do you have any ideas.

Karen, if he screams when you play some music, you will know he doesn't like it if he screams. That would be your cue to change to some other music. He should have a variety of music.
 
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Music and dancing, all great fun for most kids.
Please note some people with Autism are aversive to loud noises, touch etc.
eg.

Dancing close together may not be ideal for a child who doesn't like to be kissed or cuddled even by those they know like their own parents.
 
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Ruth

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I was talking about soft music. I think all children and me don't like loud music.

Does Jon have Autism? Like I said my son had great difficulty learning. He didn't have Autism. That is different.

Everyone learns differently.I had to find what my son could learn from and what he could not. I would have taken him to a specialist if he could not stand to be touched.
 

KarenB

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Jon was diagnosed with Autism last year at age 10. He was very late onset -- didn't really display symptoms/regression until age 5. I think he may have perhaps been predisposed, but the seizures, seizure meds and the DTap booster sent him over the edge.

He is very sensitive to bright lights and sudden noises will send him into meltdown (like a classmate screaming, or sudden laughter or sneezing/coughing or firecrackers, etc.). He loves almost all kinds of music and will rock or dance to it, and music helps to elicit speech. He likes rock/pop/rap music, but it will get him overstimulated after awhile, as will TV shows, so we have to limit those. He seems to prefer music with unusual time signatures.
 

Ruth

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Hi KarenB,

Have you found ways that you cAn calm him down. I know it is not easy.
 

Zoe

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Hey Folks,


This thread has gotten pretty long and cumbersome for me to track. What do you think of breaking some of this out into other threads, maybe elsewhere? A few possibility might be “Autism and Epilepsy, since it is coming up a lot. What do the rest of you think?
 
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