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.
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.
Is it possible that the twins have stayed on the same meds for a while? Fred is on Risperdal and it’s working fairly well! Wilma is on adderral and geodon (and all the poop meds— enemas, metamucil, colace, probiotics, etc) and….. it’s working fairly well! Is it possible that Fred has had ONE toilet accident in the past many months (not counting night-time)? Is it possible that Wilma (only so far through great scheduling and enema timing, etc) only has one accident every few weeks or so? Is it possible that Fred is down to biting once a month? Is it possible that Wilma is down to massive tantrumming once a week? Is it possible that Wilma’s whining and impatience doesn’t bother me so much anymore BECAUSE things are so much easier in general?
And the BIG ONE—- -because the Jewish camps aren’t affordable (as if I could afford two camp tuitions AND two one on one aides) and the special needs camps aren’t affordable (the past four summers we sent them to the ONE affordable special needs camp on this side of town and it got worse and worse each summer—- AND they tripled their price— so now it’s babysitting, not camp— AND too expensive)——– I’m doing CAMP MOMMY and it’s going halfway decently?????
So far we’ve done playgrounds, science center, out to lunch, out to ice cream, spraypark, mall, chuck e cheese… and we built a swingset (they helped me drill!). cooking, baking— Wilma thinks challah dough is a great sensory activity. gonna put up a basketball hoop next week and then we’re getting either a trampoline or a pool (Wilma keeps changing her mind). later in the summer we’re doing piano lessons, and we’re keeping up the limudei kodesh tutoring. We’re down to 3 ABA sessions a week and up to 2 speech therapy sessions a week. Most of my work I’m doing after they’re in bed (and still making decent money, amazingly), but for a few hours a week they come with me to my local sm client and they play with the ipad and read while I work. On the docket still to do…… bowling, library, playground world, and lots of the area playgrounds. We’ve played a few games, read a bunch of books, done some coloring/painting/etc— and so far in the past 15 days have watched ONE dvd— my daughter is NOT good at sitting and watching, lol. TRYING to get them to ride bikes with training wheels, but our gross motor skills are kinda rocky and that’s definitely a non preferred activity (double meltdown fodder). They DO like their scooters though. Here’s a funny—– one twin got a TONNNNNN of summer homework and the other twin got none. So unfair— that’s the icky thing about them being in different schools.
And the zoo. how the HECK did I forget the zoo? and I’m getting braces again so soft food for mommy will be a theme— lol.
I hire help, I utilize my hubby who is off all summer (hello, I’m the only income all summer— you will play with kids when I wanna work, k?) and SOMEHOW, so far so….. GOOD?!?!
BARUCH HASHEM for ABA (6 hours a week for Wilma these days— still waiting priority on the waiver wait list for Fred) and the right meds…… and for these monsters getting older and more mature!
Also? Also? Wilma can walk a mile with no stroller now! HA HA HA HA!!! Every family walk does NOT involve her flopping down and refusing to move! (as long as SHE picks the route). Bye bye hypotonia— you don’t rule our lives anymore! I might sell the fancy expensive special needs stroller soon!