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

Oh yes tons of OT since three years or four years ago. Yes they do gross motor as he couldn't hop on one foot or catch a ball at first. He is getting better. But with SIP, there is a lot of screen time now and lounging. I got him signed up with Basketball once a week but then SIP came and shut that down. SIGH. He isn't a fan of active movement because he isn't very coordinated. He finally stopped falling down stairs at our house or at least I haven't heard it in awhile. We haven't gone to the park since SIP. SAD. I am so neurotic about it all due to his seizures. But yes he still gets OT and it is no longer his favorite because it is online now and he doesn't get MNSI from them anymore and listening to some music doing the puzzles and activities. They have a massage table and do all those things while he does these puzzles and worksheets. Really heavenly actually. But since SIP NADA!

You always have such involved responses that takes me a bit to answer. I have to sit and digest each piece bit by bit. My son does not like to draw. And often when he draws doesn't even remotely look like the object-looks like scribbles. However if he is holding the mouse and drawing on the screen, then it looks a whole lot more like the object. His idea of drawing is getting a bunch of colors and making a mixture on the paper. So when I asked him to draw a turtle he got brown and green and just colored the whole page with both those colors. No round shape with four elongated parts and no eyes or mouth. Very heart breaking for me as I was hoping he could at least express himself by drawing if he couldn't do it with writing or reading.

When you have gone through trauma your processing speed for heavy cognitive things and frontal lobe just shuts down and it is your mere basic survival mode that is activated. As a child who was taken out by CPS it took many years of trauma to finally get me out (early teens for me). It was years and years of neglect, trauma and abuse before I was finally out. And in some of the placements, the abuse and neglect continued. So basically back to square one. 14 placements in 4 years. Which doesn't count the many home bopping I had prior to being taken out by the government. I was in a ton of different homes of strangers my parents would leave me. I have no memory of names anymore. So my sleep was disturbed. I was hypervigilant. Can't focus. Hypersexual more than I should be at my age. Always kind of hoarding for food, stuff etc. Attention wise...I craved but then pushed it away. Sabotage it. You never know what kind of attention you would get and sometimes no attention is better than bad attention. Or when you finally get good attention, it doesn't last and you lose it forever. I am 48 years old and I just finally finished my college degree May 2020. Prior to that I was dealing with traumas after traumas and trying to recover. I still am. But at an older age I have better skills to stay focus and get some good thinking going. I am finally for once overweight. LOL. Steady amount of food because my husband buys it and keeps it stocked in the house and he is a great cook. Due to the abuse and neglect, I have a very funny relationship with food. Intense guilt when I bought food and fed myself. I don't enjoy eating things unless given and prepared for me. I feel anxious when I prepare my own food like I am doing something wrong. I was not allowed in my kitchen as a kid. My house is stacked with books and that makes me feel safe. My husband comes home every night and is not drunk or loaded on drugs or in a bad mood. He knows he needs to stay in his car, get his work done and come home with a positive mood before seeing me or else I am in a mess cowering in my room or agitated. He knows not to ever raise his voice. And never give me a certain look. He knows not to touch me if I am agitated. There are certain people I can be around and certain I cannot be around. He picks up on it now and ushers them away. I literally cannot be around substance users. I pick it up fast and feel very unsafe. One bout of an episode with variable behavior, I walk. PTSD is a long long struggle. Be trauma informed. You can leave little art kits around, journals and paper and pencils with stickers. Glitter. Give her art supplies for school work. Give her music to listen. Take her lead. Let her digest what has happened to her, what is happening to her and she is probably scared knowing she might get placed back or placed somewhere else. She's not in her forever safe home yet. It won't be until she is an adult and has her own established home and family where she can let her guard down. Unfortunately she is placed in a large family and probably needs to be in a smaller home for her to truly heal and get the attention she really needs. Hopefully she gets some 1:1 therapy. The group homes I was placed him was more harm than good. It was already hard enough to deal with new adult authorities but then to deal with additional personalities and traumas of the other kids was just too much at times. Plus living with the new families' kids was just too painful in having to see how damn good their life was compared to mine made me even more depressed. If you must do school work, print out packets. Have her pick and choose. Sullivan reading program is a self directed self correcting program. That could be healing for her. No one grades her work or looks at work but her. Find things easy like simple drawing activities, to mazes, to dot to dot, word searches, crosswords, color by number. Let that brain heal. Abuse hurts the brain too. Hurts to think too much and process because the reality hurts. Better to just be numb and live in a blur. To be honest, it hurts to be abused and rejected by the ones who is supposed to love and care for us. You think you deserve it for many years. You did something wrong. Some days I couldn't leave the house. Some days I craved to have companionship but just couldn't talk or interact. I wanted people around but my brain was on shut down mode. I just needed all the adrenaline within me to subside. I eventually became an adrenaline junkie seeking situations that would rev that because my body didn't know what to do without it. Now when things have calmed down, and something happens and the adrenaline gets in my system and I am not feeling well emotionally. I retreat and decrease stimulation.

following

you know... now that you mention this... There is nothing between Prodigy, ST math, and Dreambox vs Moby Max and Iready. It is either extremely gamey or really drill based like flashcards on the screen which will not work for my kiddos.

very simple drawing resources please...

Yup we just got into the weekly Hero Kids class Monday nights. Yeehah. Looking for a weekly DND class for my older one and maybe for the younger one if he can hang. I am thinking not for now. Dungeon World By Latorra and Koebel might be the in between level that might work better. If you know anyone who can lead Dungeon World let me know.

http://nemtss.unl.edu/wp-content/uploads/2018/08/PBIS-at-HOME-Binder-FINAL.pdf

Love Dragonwood here. Hasn't played it in awhile. His is struggling with attention span issues suddenly or at least more so than before. He liked Sum Swamp too for a long time. We got stuck on counting on. So now thinking I need to back track and teach some of this so he can do the counting on worksheets. He can count like 1,2, 3, 4 but when you give him a number other than 1 to start with....he's stuck. He can't remember what number comes next after that. Never mind going backwards for subtraction. Ideas Ideas? Should I just walk around the house counting on from different starting points with him? 2,3,4,5 6,8,9,10 etc

wow. Thank you!