To be honest I should have many times. But how on earth do you shove a diastat up someone's rectum while they are seizing? You have to hold them down and wrench things apart. Seems so violating.

Yes, the curriculum is based on Teaching Reading to Children with Down Syndrome by Patricia Logan Oelwein. It has been a huge paradigm shift for me as I have raising kids using The Well Trained Mind method and this is nothing like it.

Yes I am hoping we can get the seizures under control which I think they are. The doctor however says she cannot suppress the interictal epileptiform discharges in son's case so his issues will continue. Day before Thanksgiving he had a full 45 min rage attack and we nearly had to call 911 and use his diastat. He is on lamictal and straterra will be added as well.

This is the only program that does not trigger my son. So Happy to Learn He is more willing to come to the table and work with me. Sometimes he doesn't want to leave the table and wants to keep working with me. Wish I knew about this sooner.

He has multifocal epilepsy. Interictal epileptiform discharges originating in 3 or more points on both sides of the brain that can secondary generalized grand mal seizures. My son has at least 12 different points. See attached. I matched the points mentioned in his medical report to this form. Genetics testing pending for seizure disorders to find a possible syndrome. Neurologist said basically as a result there are only two meds (Onfi and Depakota) he can try after this current one he is on. He is on Lamictal as we had to take him off zonergran and neurologist doesn't want him on topamax either (similar to zonergran). If after these other meds, he can get the VNS implant. RNS implant when he turns 18 years old. Even with the implants, medications are still needed. He also has limited with sleep 3 and 4 level sleep. Like no REM sleep. So he is going into a sleep study with more eeg soon. Her goal is not to suppress the interictal epileptiform discharges and she is comfortable with one eye deviation a week as long it is no longer than 5 mins.

We got the low gain hearing aids. He is doing great and talking a whole lot more and engaged. Asking for names of things and why they are called that. Also starting to self correct his speech more. He also has gotten more physical too like running, jumping with less clumsiness. Happier in general. He keeps it in for 9 hours for an hour break or so midday.

IEP Was three hours long and still not finished. Still processing it. It was more of a record review of the annual and triennial plus DHH preliminary assessment.

Spoke to Neuro earlier in the week: med changes to continue to decrease zonergran (can cause memory, behavior and LANGUAGE issues) and increase lamictal despite the fact there is a FDA warning that just came out that Lamictal causes Arrhythmia. If the lamictal doesn't work then he is a candidate for VNS implant but she is not running towards that as it makes future MRI's complicated. He is waitlisted to go into SF Kaiser for 24 hours eeg Electronic Monitoring with Video. Had DHH assessment yesterday. Genetics appts today- ordering Exome genetic looking at the connection of Seizures and cardiomyopathy ( my oldest son died at age 23 with these), I am getting a heart ultrasound. Then he will need an ekg every few years and then echocardiogram when he is close to 20 years old. Blood work for me, him and his dad. Iep Friday 8:30 am -record review annual/triannual -just to review all the stuff that's been happening for the last month or so Getting Fitted for Hearing aids MONDAY

Had a meeting with neuro.. He is waitlisted for eeg EMU in SF. He will be getting a battery of genetic tests. VNS implant is an option if lamictal doesn't work. But doctor is hesitant to do VNS as it makes it hard to get MRI's. Still going through med changing and waiting for hearing aids and recommended to hold off on all assessments until these things stabilizes.

https://www.modelmekids.com/autism_curriculum.html

Another one..... https://www.iidc.indiana.edu/irca/articles/curriculum-materials-and-programs-for-individuals-on-the-autism-spectrum.html

https://www.appliedbehavioranalysisprograms.com/autism-homeschool-curricula/

We are with Kaiser an HMO and limited to what they are willing to do. Must always follow protocol or their flowchart.

I am about to draft up an email to his neuro regarding genetics testing (they did a battery of them when he was first dxed with autism i think) PT referral through medical or educational?

Oooo good info! Thank you PeterPan