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?
Haven’t had an evening this terrible in a whole week. I am physically and emotionally SPENT. Wilma’s therapist had to tell me to “breathe, just breathe, just focus on breathing” for a good 20 minutes while I hyperventilated. Anyone know how to cry but control the over the top hyperventilating? I’d like to have a cry when I need to (my shoulder got injured in the chaos and it hurts, but not enough for the ER) but not have it affect my blood pressure and physical being for hours afterwards.
Anyhoo…..hubby went for a walk to get away from it all and ran into someone who doesn’t know our situation all that well and didn’t know that we haven’t taken a vacation since 2006 and certainly doesn’t know that hubby had just been punched and bitten. She said “you look a little stressed…. perhaps you need a vacation”. WRONG THING TO SAY TO ONE OF US unless you’re handing us a qualified babysitter who could handle a potential dangerous situation….. who Wilma would allow to do her medical treatments (she won’t even let hubby do it— I’m the freaking only one allowed near her). Go ahead, y’all. FIND the perfect babysitter for an autistic 14 year old who is likely to beat you up and harm you physically……. who can also do medical treatments on a 14 year old who WILL. NOT. ALLOW. YOU. TO. DO. SO. Soooooo we don’t vacation. Ever.
She should have STAYED AWAY FROM HUBBY.
A certain head of an Orthodox Jewish day school saw my husband at shul with his sleeve rolled up (the men roll up sleeves to put on their tefillin) and told him he shouldn’t roll up his sleeve in shul because he’s scaring the boys from his school at davening with his bruised up arms. Gee, sorry our getting chomped by our aggressive kiddo is terrorizing the same twerps who run around calling my husband the “retard manager”. (I’ve probably mentioned it before— a large group of boys from that school call my husband horrific names because he used to work there as a 1:1 para (with a “retard” (note the quotes– I hate that word— but those boys love it and are never called out on it) and he himself has kids with disabilities, who, according to this stellar group of young men, are “retards” as well.
He should have STAYED AWAY FROM HUBBY.
In short….. if you’re approaching us to tell us to take a vacation, tell us God doesn’t give us what we can’t handle, tell us that God gives special kids to special parents, or to tell us that we’re scaring children with the bruises we incur by being punched and bitten……. just STAY AWAY FROM US.
It’s been a while!
Most of you know we’ve got 14 year old twins with autism. Fred is extremely aggressive – we get attacked all the time. Wilma is doing BETTER over the past number of years but certain things with her are a major issue and she instigates everything with her brother. Both kids are verbal but two of the toughest, behaviorally, in the county, according to our board of dd. My kids have been to WAY more doctor and therapy appointments than playdates or road trips/ vacations. That’s just the way it needs to be. We took a break from therapy from the tail end of 2019 until the middle of 2020— things were going ok with no therapy at all through winter of 2019 into 2020. By the end of our journey with the previous therapy company, NO therapy was a definite improvement. Then Corona hit and from March through August my kids had no structure whatsoever and Fred was back to biting, hitting, and kicking us and having massive scream fests. Anytime I tried to suggest a family walk or a science experiment or art project or ANYTHING…… Wilma thumbed her nose up at the suggestion and refused. She RARELY got out of pajamas from March through August 2020. Because we had broken up with the other company for various reasons (that will be a whole other blog post someday!) we attempted to get therapy via a different company. Insurance would no longer pay for that type of therapy for the twins because we had already had so much of it. (Plus they turned 13 in January 2020 and it’s much harder to get teens this type of therapy than it is to get it for younger kids). We went back to the board of DD to work with their free program for kids who need a lot of help who aren’t currently working with a therapy agency– specifically for the highly aggressive kiddo. We got lots of zoom appointments and it all boiled down to us needing to get the other kid into more structured therapy again because she’s poking the bear. If he were an only child, we’d have a fairly decent handle on his aggression at this point, and on his behaviors in general. But whatever the board of dd tells US to do…… the other twin won’t do. She won’t ignore, she’ll start yelling instructions, she’ll offer to restrain her full sized (he gained 100 pounds in the past year!) twin brother, etc etc. We’re literally ten seconds away from the county insisting on placing him to keep the other three of us safe. He knows that, she knows that, everyone who has seen my husband’s body lately knows it. (he scars easily). Sooooo, the board of dd got us on a waiting list for therapy that’s supposed to be the creme of the crop. For HER. Great, we’ll give it a try. In the first 2 months of therapy with the new company, the therapist missed three sessions due to a death in the family— company gave us no sub. Then she’s back and we’re finally STARTING to make progress with some of the programs she’s putting in place—- whammo, she’s moving to San Francisco next week. We’re at the point where we’re afraid to have no therapy for these kids and we’re afraid to keep going with therapy because there’s never a guarantee of COMMITTMENT, of continuity, or of the same gosh darn person being in our house for more than a month or two. Wilma burned through 13 therapists with the previous company in just a few years. To add to the rotating dance of therapists in and out of our lives, it’s hard to keep the kids on the same medication regiment for more than a few months…. every psychiatrist in the city has the same ideas— let’s try this— hmm, ok, we’ll increase that med….. take her off that med….. put him on this med……. I’m getting TIRED. No advice necessary, it’s just time to VENT. I’ve been quiet lately around here. Thanks for listening! I’ll try to post more often…..
Let’s play what is worse…. (or most emotionally exhausting)
- Parenting two children on the spectrum
- Being told that autism is a mere myth and that symptomatic behaviors are the result of incompetent parenting
- Hearing the theory that they are too smart to have autism
- Being told that we should not talk about the issue and just suffer silently.
Today we had issues with #1 and #4. #1 was ANOTHER horrific meltdown from good old Fred.
Hubby was approached at Walmart today by an important member of our Orthodox community (important in our community means rich or a Rabbi or a head of school….. someone whose name is synonymous with the community— side note— hubby has now decided we will move to a community where no names are revered more than others. Anyone know a Jewish community with no adored rich or important people? mm hmm)—– she said she’s been meaning to talk to him about something……. she said we need to stop being public about our childrens’ autism and stop seeking support. We need to be quiet about it (suffer silently) because it’s a blemish on our community.
I feel really terrible that our current crisis (yes, one twin is most definitely in crisis now— many of my autism related facebook posts in past years were positive/ funny/ informative) makes her feel a bit uncomfortable. See the tiny violin I’m playing? Nope, can’t lean it against my body— I have a bruise there— yeah another one there—- hmmm that finger is permanently injured so I can’t hold the bow right— eh, screw the violin. Yet again hubby is yelling at me about moving.
By the way, while we’re keeping Fred home and away from synagogue for months on end, some of the men are complaining that he’s a Bar Mitzvah and they never see him in shul. So some people think we shouldn’t seek support when we have issues and some think we should ignore the issues and just act like nothing is wrong (same guys would complain when the guys are comparing bite marks during a mega meltdown). Again, hubby is talking about not only moving, but moving away from the Jewish community completely. Hashem— if you want us to remain Orthodox Jews, give us a sign– please.
To those parents who have been there and done that—– how did you know it was time for a psych admission? What do they do that’s helpful? serious question. We’ve never admitted Fred (yet) — we’ve gotten beaten, kicked, punched, bitten—- but USUALLY (pre corona) on 4 strong medications he’s done in 10-15 minutes. Now with no structure he’s up to 45 minutes to an hour of hell making his sister cry, us cry, my husband scream at me to call the police, me trying to calm my husband down—- but I just don’t know how the hell a psych admission would help him or would it be more of the same— well let’s try this med, let’s try that med……. do these places actually ever take a kid OFF all meds and start fresh based on data they take? HOW does a psych admission work? One of us would have to stay with him and one of us would have to stay with his sister— for a week? Two weeks? How do parents WORK while this is going on? We’ve been living off savings this summer but hubby goes back to work soon.
I was getting dressed after my shower tonight and I made the mistake of looking at myself in the mirror— you know in the movies where you see domestic violence victims seeing their bruises in the mirror? Yeah.
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?”
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!