yet again we JUST BARELY escaped the hospital and the police because of Fred. By sheer LUCK the neighbors didn’t call the police and by sheer response blocking experience we didn’t land in the hospital but we have some shiny new bruises. Hubby has a loose tooth and will call the dentist in the morning. No dental insurance — if it’s going to be a crown it will be about $1000 we don’t have, right? In addition—- Fred bit my husband’s arm down to the bone—- an arm/hand surgeon said there isn’t nerve damage but there might be bone damage. There were many hours that he had no feeling in his hand but feeling is coming back now so I’m optimistic there.
It was only an hour but it was a VERY LONG HOUR when before covid craziness the worst of the worst was down to maybe 20 minutes two times a week– now it’s EVERY day for at least 20 minutes but tonight an hour. I’m dripping in sweat. Some of my friends in an autism moms facebook group go through this for MORE than an hour— every day—- I just….. ugh…….. Wilma who ALSO has autism was crying her eyes out saying how unfair it is and how she wants to run away.
Fred is now on Depakote, straterra, tenex and Lexapro. (ALMOST as many meds as Wilma!) He was at his best at the beginning of the abilify and Risperdal days (before he was on the largest dosages for his weight and they each stopped working). So— back on the meddy go round we go. I guess we’re going back on one of those. This psych just loves our family.
At last count, the four of us are on Fred (4), Wilma (5), me (4), hubby (6) prescriptions every day—- and some randomly like all my post surgery meds for the 3 surgeries I had in the past 6 months. I should really open a pharmacy.
Autism is kicking my ass lately.
Trying to catch up on this here bloggity thang. Looks like I never updated y’all about the school situation? Wowza. Was too busy living it to blog it.
Fred was kicked out of public school. Suspension after suspension after suspension— multiple emergency IEP meetings where they granted us a 1:1 aide just for 30 days even when I warned them it should be an rBT supervised by a BCBA and it should be the same aide….. suspension was not a deterrent, his impulse control got weaker and weaker, and his desire to GET to stay home from school got stronger so he would punch teachers on purpose to GET suspended. “Our policy is” are my least favorite words. The district now spends thousands to send him to a behavioral school. I LOVE his new (not so new anymore!) school. THEY NEVER SUSPEND. THEY WORK WITH BEHAVIORS. I’m thrilled. This school goes through 12th, but they’ll attempt to pull him back into public much sooner. Momma bear will be ready to fight again for no suspensions for autism related behaviors. Suspend a kid in a wheelchair for not trying harder to walk, why don’t you?
Wilma is doing great in public school. So great that we tried to put her in a Jewish school with just a 1:1 aide. Medicaid would have had to pay for at least 20 hours a week of the ABA aide— they weren’t willing. Our state’s autism scholarship can’t cover a full time rBT and she can’t handle just ANY aide— she needed a behavioral aide if she was going to be in a school with no trained intervention specialists. So— she stays in public. GREAT, but her new middle school will be 1200 kids. Already had the transition meeting and I’m cautiously optimistic.
Fred is on depakote and straterra currently. Wilma is on adderral, geodon, all the junk through her C tube, and…….. birth control. We had to stop the heavy periods. On depo-provera she gets a normal period every 3 months instead of a heavy one once a month— it’s working fine and now she can wear underwear and pads during her periods and go to school and camp instead of stay home and fill pull ups with bowel movements that go completely whacko during heavy periods.
They’re in camp for six weeks— the ONE daycamp on this side of town that takes their medicaid waiver, works with kids like them, and is right for them. He was suspended today and I had to have THE TALK with the director. PLEASE PLEASE don’t get suspended again, kid.
Fred now has new meds on board— no more seroquel and we’re weaning COMPLETELY off the risperdal. His new med? Depakote. No behavior changes yet (not good ones at least) but…… NO MORE ABSENCE SEIZURES! I was on my way to the EEG merry go round but depakote saved us from THAT fun rabbit hole. They just….. went away! Ok so he still screams, bites, kicks, hits, screams, and …. yeah he SCREAMS…. but he’s usually in our world and not completely in la la land! Those seizures were scarier and scarier as he was getting older.
Fred now has a new school on board— basically, he’s been kicked out of public school. More suspensions since the last time I wrote. More IEP meetings. More frustration. More “I want to AVOID due process” in my nicely worded letters. He’s now in a small school in a small class….. which SPECIFICALLY works with kids with behavior issues. It’s not a permanent fix. The district likely won’t pay for this forever. But for at least the next year, school is going to be a-ok.
Fred now has new therapists on board. He got his waiver in July so this week we finally dropped his old ABA company for his sister’s company who hired a therapist for him who ALREADY KNOWS AND LOVES HIM! Hoooooray! Trying to get up to 8 hours a week. Currently at 4, but better than nothing!
Wilma has her cecostomy surgery scheduled. MOST days she isn’t crying from the anxiety of it and sometimes she’s even excited about an upcoming hospital stay.
Wish me luck— two weeks of winter break now, otherwise known as “can’t these people get along for 6 minutes? And when the heck am I supposed to get anything done?”