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.
One of Wilma’s therapists is off our case for good and it’s a welcome relief. Already have someone else in place a week later.
If you want to work with kids with autism and you’re asked to give 2 weeks notice of an occasional absence, and your job with us is 4 hours a week, you can’t be absent at least once every other week and give less than a week’s notice about two week absences over and over AND complain to your family about our family. (HIPPA anyone?) Don’t screw with my kid’s’ mental health.
Wilma’s other therapist is growing on us and Freds’s therapist is really quite good. Their supervisor is EXCELLENT—- so I think with this change we’re in a good place.
There are far too many families dealing with similar crapola….. 9:30 pm, both kids are sleeping, and I’m cooking Shabbos because I’m out all day tomorrow. (I wrote this Thursday night). All of a sudden I hear a sweet “can I come downstairs and tell you something very quickly?” I say sure, but then please go back to sleep. She tells me she has a loose tooth and she wants me to look in her mouth— I had no idea she’d start screaming her head off. She’s terrified it’s an adult tooth. I have no idea whether it’s a kid tooth or adult tooth— I can BARELY get in there— I got a half second peek before she started screaming her head off, waking her brother and then I was treated to another lovely double meltdown right as I’m supposed to be making Shabbos and my husband is out at daf. yay. Full physical prompting up the stairs with a kid who weighs 110 pounds isn’t fun. Guaranteed that when my husband is in charge of getting them on the camp van tomorrow she’ll scream at him that she’s not going to camp and she demands an emergency dentist appointment. If she’ll calmly simply let me LOOK…… but nothing ever happens calmly around here. Autism, thanks for striking again– hadn’t seen ya in a couple of hours.
And…. Well we made it almost to week 4 without getting suspended from camp. Fred will be home with us Monday without his sister. Not. A. Deterrent.
Wilma: “can I call the police department and let them know that fireworks can’t go off tonight because I have daycamp in the morning and I need to sleep?” Me: “put on your fan and let’s hope for the best.”
Every year I say that noise free fireworks need to become a thing. Autism, PTSD, veterans, pets….. there are a lot of reasons not to have big loud bangs after bedtime, yo.
And…. Why is the guy who gets ticked off at my husband that he doesn’t bring our son to synagogue in the evenings (after he likes to be asleep) the same guy who’d be royally pissed off at our son’s behavior if he did?
Some nights I just want to chuck the risperdal, vitamin D, multivitamins, probiotics, fish oil, geodon, adderall, colace, NAC, tenex (gotta crush that one of course), and last week benadryl (but no more albuterol because I was told maybe THAT caused more aggression) (Fred was sick- he’s fine now, but every time he gets a cold he gets R.A.D.) ………..out the window and just tell the kids to go to bed. There are families out there who don’t have pharmacy hour between exercise time and bedtime– amazing.
risperdal—– WAS working well for Fred. Until now. He’s now at the highest dosage and he’s been suspended from school 5 days out of the past 6 weeks. Emergency IEP meeting—- I asked for a 1:1 aide. Denied because “he has more good days than bad”. I asked that they stop suspending him because you can’t suspend impulse control into a kid with autism. Denied. I asked for another FBA– got THAT rolling.
Vitamin D—- Wilma is low. Duh, we’re in Ohio. Why is Fred not low?
Geodon— working fairly well— she’s having a good year. Today I was told at her anal manometry that they’ve not usually done manometries on kids on such strong anti-psychotics. yeah, ok.
Adderall— working super well—- she always does homework nicely, and always sits through class well, needing just a few breaks per day.
Tenex— just added it for the finger picking and forehead picking…… she gets one pimple and spreads it into a little colony by picking and picking. Fun times. Tried tenex before and it did nothing, but that was years ago.
Fred got suspended for reaching into a (male) student’s pants and underpants to touch him inappropriately. Just in the past few weeks, he looked up inappropriate videos on the school computer, got suspended for violence, and now this thing that’s just……. *sigh*—– yeah it’s bad. The roller coaster of these kids and their issues is intense. I cannot believe how FAR he went this time.
Suspended kid really feels suspension is a complete deterrent. (not) He was home without his sister. Even though I’m not taking him anywhere fun (yup, he asked), and even though he doesn’t get to stim on the ipad/tv etc because I’m a mean mom who is making him play outside and draw, he’s pretty much in 7th heaven—- a house without Wilma. Want to give my kid a consequence that makes sense? Send him to Wilma’s school for the day and make him be with her all day long.
So tomorrow will be his third day of suspension in the past month. School went straight to suspension, no stopping at FBA/BIP even though his last one was two years ago. On the one hand, they need to show the other students/ parents that even though Fred has special needs he gets CONSEQUENCES for his actions. On the other hand, suspension is not a deterrent. If you ask him WHY he got suspended, he says “for screaming”. ugh. Emergency IEP meeting on the 26th. I’ll be asking for a one on one aide. Spoiler alert: I’ll be told no.