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/ST...ing-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/g...lds-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.