Working Man

One small positive update about my kiddo….. Fred will be working 4 hours a day at Goodwill for two weeks in March. It’s a special vocational skills assessment to prepare him for potentially working a six week job this summer. One of the weeks will be spring break and he’ll miss five days of school the week before spring break. In addition, he’s been working at a grocery store two hours a week with his class all school year.

As far as the grocery store work EVERY week all year….. Yes, he DOES need some of this. He needs the skills of listening to instructions, doing non preferred tasks, communicating with a boss, etc etc. But— -his school does a LOT of this…. multiple times a week. Plus cooking— multiple times a week— all good stuff once in a while, certainly—- BUT— it is to the detriment of a regular high school curriculum— none of the academics at this school are on target—– no honors or AP or foreign language or tech courses offered— but also nothing just at a REGULAR high school level even. I have no idea how many of the kids from this school go to college but I’m getting the sense that it’s not a lot. Yes, he needs a behavior school— but he also needs the chance to go to college if that is what he wants—- yes he’ll need to live at home, but I want him to be able to get into a variety of Cleveland area schools if he desires and I’m getting the sense that community college is THE path where it won’t matter that he’ll be coming from this school and will have no foreign language credits. Nothing wrong with that if that’s what he wants but I just want choices for him. Wilma gets special ed support too, but in a school that provides a zillion opportunities. Without any prompting from me, she was signed up for accomodations with the college board, signed up for the PSAT— done. He will take the PSAT next year if I push for it. It certainly wasn’t offered to him this year and *I* had to bring it up at the IEP meeting. AT this school he takes his math and science online but even that is—- meh. At least it’s on level. So I’m TRYING to fight for him to take ONE class next semester at Wilma’s school (the public school). He’s not really WANTED there so it’s up to me to fight for it. If I pull him from the behavior school I COULD have him do school fully online– that’s another possibility. The longer he’s been out of public school, the less of an opportunity he truly has to be able to go back. It’s not like the behaviors have disappeared or like he won’t be suspended over and over if he goes back to public.

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Late Planes, Trains, Automobiles

Van for daycamp (yup, my almost 16 year old twins still go to a special needs daycamp– they take kiddos ages 5 to 22 I think) was late this morning so Wilma refused to get on it. FULL MELTDOWN— set FRED INTO A FULL TAILSPIN. Consequence is nothing fun all day—- so while I was on a long zoom assessment from 10 to 11:20 for her brother to get into yet another program over which I have zero optimism, she’s been in the other room yelling “I’m bored” at my husband while I begged him over and over to get her OUT OF THE HOUSE. Take her for a haircut. Take her for a walk. She’s absolutely un-moveable. So I did the assessment with the loud background noise. Prayers that I don’t kill her upon leaving this computer screen. (KIDDING, y’all).

EVERY TIME she’s been picked up late for anything, she goes HAYWIRE, sets Fred into a tailspin and we all get hurt (bitten, punched, pinched, kicked by Fred). No amount of consequences send her the message. The question is— do I keep doling out the consequences for her behavior? Or is it like punishing a child in a wheelchair for not trying harder to walk? She’s so darn high functioning otherwise and her ODD, ADHD, encopresis, megacolon, (and a partridge in a pear tree?) are SO MUCH WORSE than her autism (especially when comparing HER flavor of autism to brother bear’s)…. but this…… this is her autism with a CAPITAL A. When setting up a teen volunteer from an organization to hang out with her? We’ve learned NOT to have the teen come to our house. If said teen is five minutes late, FORGET ABOUT IT! Wilma will come to YOUR house, please. (when teens have come five minutes late, she REFUSES to engage and/or screams at them to go away– -fun times).

She’s missed a lot of school and daycamp over the years—- after the meltdown she takes a nap— always. After the nap, even if we offer to drive her there now that she’s calm— NOPE. THANKFULLY her high school is in walking distance. If her high school bus is late, instead of a meltdown, she calmly asks me for permission to walk if she JUST. CAN’T. WAIT. THAT is behavior worth rewarding, and THAT is the primary reason she has a cell phone— she sometimes walks to or from school (about a mile) on her own. Daycamp, sadly, is NOT in walking distance. She COULD ask us for a ride, but if we calmly ask her to wait ten minutes and then we’ll give her a ride? NOPE. Meltdown city. So either we waste gas by giving her a ride if the van is just five minutes late or we’re treated to this fiasco.

Winter Break Starting Early

Both kids are home till January. After the second incident at Wilma’s school which brought her home mid day Monday, police haven’t finished their investigation so finals are postponed till January. It’s a large public school and copy cat syndrome is real. High schoolers all over the USA are learning that they can post a few words about shooting up the school with a pic of a gun and they can get school shut down for a day or two (or four and a half). Yes, she and her bro are in 9th grade this year. 9th! Today is Wednesday— she was home half a day Monday, then Tuesday, and now Wednesday through Friday and THEN two weeks of winter break. These incidents brought her to TEARS but the school handled her so well. Knowing she has autism and adhd she was escorted out of class for both lockdowns to work one on one with a staff member and not have to just scream and cry in the classroom. She got a phone this summer so she texted me 40+ times during each lockdown (before an early police escorted dismissal) freaking out—- nice that I knew what’s happening from her perspective but ugh.

Fred is home because of covid quarantine— I think (but am not certain) that one of his classroom teachers has covid. So his whole class (all five of them) are doing virtual learning last week and this week up to winter break and THEN two weeks of winter break….. so he’s also home for a month. But he didn’t need to put on a shoe all week since he’s been home, so that’s good….. he got 8 stitches in his foot a week ago tonight. He’s getting his stitches out (hopefully) this Thursday morning.

To clarify for anyone who assumes I’m always complaining…… I do post a LOT on here about hilarious things my kids say and do. I LOVE my kids. I LOVE spending time with them. HOWEVER. They have severe behaviors. Wilma’s is refusal. oppositional defiance disorder as part of her autism and adhd. I ask her to do something and she won’t. I can do plenty of planned ignoring and quietly taking away priveliges until I get the desired behavior but her twin brother CANNOT. DEAL. WITH. HER. BEHAVIORS. His knee jerk behavior when I ask her to come back to the bathroom and wash her hands after using it (for example) is to scream and run after her to bite or punch her. He’s a rule follower (other than screaming, biting, and punching…..) and can’t handle it when the rules aren’t being followed. He ALSO has autism and adhd and his autism comes with a huge side order of aggression. So double meltdowns happen every school break— winter, spring, summer. They need plenty of time AWAY from each other and they get that with the structure of school. Two different schools since preschool. So BREAKS ARE HARD. Plus with his aggression we don’t go to hotels or out of town or on long car trips or visit people or…… etc. Plus because of her physical issues we don’t leave them overnight (I’m the only one allowed to do her nightly medical treatments— she won’t even let hubby go near her). ok, thank you for coming to my TED Talk.

ps sometimes we get a 2-4 day break from being bitten and punched but this week between her two times being sent home early from school incidents and having days off after each incident during police investigations and his getting 8 stitches in his foot and oh I didn’t yet mention a 14 hour power outage which threw her into overdrive throwing him into multibite mode, the behaviors have been on high alert around here. Over break I HOPE things will get better with PLANNED time off from school and stitches coming out and no more power outages (they scare the crap out of Wilma giving her PTSD from our 4 day power outage last year). Of course over break we have 2 psych appts, 2 OOD appts, 2 board of DD appts, one stitches coming out appt, 1 derm appt, and 1 medication shot appt.

Many people planning winter break—- oh, we’ll get together with family, we’ll travel to another state, we’ll go to parties, maybe a concert………. us planning winter break…… only 9 appointments so far……. what else can we do so that she doesn’t yell “I’m bored” over and over which will throw him into multi-bite mode?

Ch-Ch-Changes

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?”

 

(Not The Only) IEP Meeting Where I Cried About My Son’s Behaviors

So here’s how it went down.  In writing, I asked once again for a 1:1 aide and for them not to suspend him.

I got three things…..

 

A trial period of a 1:1 aide for 30 school days.  It won’t be HIS aide, but the intervention specialist gets a second aide for all of her kids.  So in all functionality, he’ll have a 1:1 all day long— he will no longer be un-shadowed in specials, lunch, recess.  S/he won’t be an rBT… might not have experience with autism or behaviors…..  but s/he will be a warm body willing to learn about him and his behaviors so I have to say it’s a step in the right direction.  If he doesn’t get suspended again within the next 30 days, we reconvene to talk about how it worked out and then I have to fight to make it more permanent.

 

If he DOES get suspended again in the next 30 days, we talk about alternate placement.  There is another school within the district that has more of a behavior program.  Someone explain to me why any school with an autism program doesn’t also have a BEHAVIOR program?  But being with other students with similar issues and teachers with experience with these issues can only help him.  He’ll be likely to have fewer transitions as he can perhaps be in the behavior classroom most of the day instead of general ed and perhaps social skills and behavior interventions are done within the classroom… we didn’t get that far yet.  But we’re eons away from placement in a private school.  He hasn’t exhausted the district yet— just perhaps his school.

 

On the note of fewer transitions—- he’s currently doing fine academically being pulled for gifted ELA (English/ language arts) and gifted math.  But there is lots of anxiety and screaming about gifted ELA.  We might just pull him from gifted ELA— we don’t need to make the decision right this minute but I asked him if he’d like to leave gifted ELA and he said yes.  His behaviors are trumping his need for advanced academic support especially in ELA which he HATES.

 

Let’s see how the 30 school days with additional aide support helps…. I’ll keep you posted!

Spring 2014 update

It’s been a while….

Wilma is on 6 mg of abilify and 30 mg of adderall and doing AMAZINGLY both at home and at school. At school, there are virtually NO more episodes of flopping to the ground and screaming her head off. At home, there are entire days with NO episodes of ODD. The adhd has disappeared into adderall oblivion and homework is a breeze. Her major episodes are all ODD related and down to a few times a week rather than a few times a day. She does pick her fingers until they bleed on purpose and get blood all over herself on purpose (she even puts it on the doorposts right before Passover— irony!), but that’s SMALL potatoes compared to the days of rolling her in a stroller screaming out of the library, being kicked out of Chuckee Cheese, etc. I’m still terrified to take them most places by myself but that’s from remembering history more than today’s reality… I think. But I don’t want to put a mahooey on it. AND—- a majority of her poops land in the toilet due to great laxative timing, and a teeny bit of command of her nerve endings! She poops in her underwear but just a little bit— tells me immediately and then I can put her on the toilet and she does the rest– huge improvement! A couple of times I’ve even caught her fidgeting and told her to try to poop— CLEAN underpants and an ENTIRE bowel movement in the toilet!

I credit our county board rep for a lot of the improvement— she’s helping me chart behaviors and target particular times of day and particular triggers. Of the Center for Autism’s outreach program, the psychologist, the developmental pediatrician, and the county board rep, she’s probably the most helpful— it’s taken a long time to gather this dream team.

This month’s improvements: Chuckee Cheese got rid of some games and brought in some new ones. She didn’t flop on the ground, scream her head off, and throw her shoes at strangers. She simply…. made friends with a new game. Amazing. We had stopped buying soda for a while. We had some this week—- she wanted some after dinner tonight. I asked her to wait until she was finished with her chicken. NO plates went flying. No forks went flying. Seriously, it looked like a typical dinner with typical children. There are entire days with no behaviors worth writing down. There have been days with 83 to 120 minutes worth of severe behaviors. But lately—- 20 minutes over the course of a day is typical for us (on a weekday when they’re mostly at school anyway, but STILL!)

Fred is on 10 mg of abilify and OFF the zoloft and doing better at home. He’s doing better at home simply because WILMA is doing better at home. At home, I don’t give him a lot of expectations. He’s had a long day at school. As long as he does his homework and goes to his after school activities, I pretty much let him have at least a half hour of ipad or computer time a day and that keeps him fairly calm until Wilma starts up. At school, however, things have gotten significantly worse. It all started during the zoloft trial period, but it’s continued and through putting together the FBA and changing up his behavior plan at school and bringing in the county board rep to observe him at school, I’m starting to wonder whether to ask for a placement change (self contained class), a one on one aide, or a different (read– expensive autism based) placement. I LOVE this district and don’t want to come in with a lawyer and beg for what costs money….. they’re trying so hard and they love him so much. But he’s biting, kicking, and hitting. He’s spending a chunk of each day screaming. The county board rep arrives to observe him and hears his screams from outside the building. It’s heartbreaking. He’s calming down at home, but so overwhelmed at school. Academically he’s fine. Socially and emotionally, he’s having such a much rougher year than last year.

Today, he fell at school first thing in the morning and bled all over his pants. They called me to come take a peek and two teachers and I all agreed that maybe he might need one stitch. So I took him to the hospital. Two episodes of Sesame Street, a green popsicle, and 3 hours later, he’s got 4 stitches. Took him back to school for the last hour of the day, came home and finally ate my breakfast at 3:00 pm after filling his pain med and antibiotic ointment scrips. Fun times.

PS— Wilma’s medicaid waiver was approved on January 29th. It’s now April 1st and we still haven’t been approved to begin services (we want ABA!). Meanwhile her behaviors have improved somewhat—- maybe if they make us wait long enough, she’ll behave appropriately 100% of the time. hah.

The Crazy World of 2E

It’s official. They finished their 8 million tests and Fred is officially 2E, twice exceptional. He’s identified for now in three categories since they didn’t test for all categories. We are NOT grade accelerating but we ARE subject accelerating, just in math. At this point what that means is that they are moving him from first grade to fourth grade math starting in January. They want to move him for science too if that goes well. It’s not my job at all, of course, but what I’m doing right now during winter break (have I mentioned these monkeys are HOME for two weeks?) is going through each unit of the second, third, and beginning of fourth grade curricula to see what skills he’s missing. Printing out worksheets on those skills, and getting him ready for fourth grade math. If I don’t finish, he’ll struggle— which means he’ll scream and cry and freak out in class. If I do it, he’ll academically be okay, but he’ll still struggle— which means he’ll scream and cry and freak out in class. (The zoloft increase isn’t going well and his anxiety is at an all time HIGH now). So really, nothing I do matters. But it will make me feel better to know that he’s prepared. He can either be bored out of his mind and scream like a banshee during school or he can be academically challenged and still scream like a banshee— so I’m glad we’re doing this— but I’m not certain they’ve ever had another kid in this school subject accelerate so many grades at once. They don’t have a self contained gifted program until fourth grade which means he’ll do fifth grade math in second grade at this school and then we’ll have to decide what to do with him for third grade— I don’t think they’d bus him to the middle school for math and back and I AIN’T homeschooling no MATH, no sirree. I trust the school— they’re GREAT with him. Does he need better meds and better anxiety control? You BET. But academically and socially they’re doing all they can for him as he continues to tumble downwards away from his peers socially and run rings around them academically (particularly with math). This kid is a CHALLENGE. In the same week we did his new IEP and did his gifted scores, we also did a 28 page FBA on his biting behaviors.