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.
When Fred started yelling curse words at his piano teacher’s house, his piano teacher asked us to move piano lessons to Facetime. Her young kids are home a lot….. this way, on Facetime, she can wear headphones and her kids don’t hear Fred’s side of the lessons. Better for her. Harder for us because I have to sit right next to him to watch his fingers more closely and for whom does he reach when aggression hits? Me!
When Fred bit his ABA tutor we were asked if he had a current std test. He was like 12 at the time. Good for them to have a papertrail that he’s clean. Hard and offensive on us. Really damn offensive.
Last session with the pre-employment gal from the agency providing services so that through the Office of Ohioans with Disabilities, the twins might qualify for a work program next summer….. Fred punched the gal. I wasn’t at all surprised. Horrified as usual, yes, but not surprised. I WAS surprised he didn’t BITE her. Sooooooo from now on our pre-employment sessions will be over zoom. Better for the pre-employment people. Harder for us—- keeping Wilma engaged on zoom is impossible and with her psychiatrist I’ve COMPLETELY given up—– her psych doesn’t require me to have her sitting at zoom appointments with me, thank goodness. So I’ll be dealing with his “what do I write here” meltdowns, dealing with her wandering off, and dealing with the gal on zoom all at the same time (around the same time that my husband comes home and wants dinner)– life is fun. Again, better for the pre-employment agency. Harder for us.
Sometimes it’s not even the behaviors themselves—- it’s the aftermath. It’s the “oh I can no longer work with you face to face, sorry” or the “has your twelve year old tested clean for STDs?”. And I know where this leads….. .when we finally give up on trying to keep him at home because truly, our other child isn’t safe— forget about US……. show me the group home or residential treatment center who WON’T try to deny him because “we take those without such behaviors”. If he didn’t HAVE the damn behaviors, he wouldn’t need to leave home, now WOULD he? I’ve had friends go through this—- denial from services due to behaviors that are too severe. As it is, the kid is kicked out of public school. Public SCHOOL! ok, he’s in a “school”, but it’s NOT a school I would WANT for him and he does NOT have the same opportunities. They’re very nice people, but…… ok, that will be a different post.
I posted the following on facebook tonight (using Wilma’s actual name): An ambulance and three police officers later, all is ok at our house but Wilma is in the ER, hubby is with her, I’d rather not say more than that and if you’d like to pray for all of us that would be appreciated. Hug gifs below please. Or jokes.
I got love and support jokes and gifs and that was great. I did NOT say that I called 911 on my own child, right? But then hubby went to his nightly daf yomi class and got harassed.
who the hell told the guy who harasses my husband that we called 911 on our kid? Neither of us wrote that on our facebook — we mentioned police and ambulance but we didn’t say it was because of our kids. we simply said Wilma went to the ER— we didn’t say why. and the neighbor who saw the police and ambulance wasn’t told that we were the ones who called. So whoever is reading our posts, ASSUMING we called 911 on our kid, and reporting it to the asshole who harasses my husband—– you are about as much of an observant Jew as the asshole who harasses my husband—– observing only the Jewish laws you think benefit you and certainly not the ones relating to man versus man (or woman of course). If you are talking “facts” about our situation tonight to other community members, go ahead and unfriend us.
By the way, it’s not just one guy who harasses my husband. But for tonight, HE is the one who has threatened to come over and beat up my husband because we make our community look bad.
Don’t judge Judaism by the Jews.
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.
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.
Abilify, Aggression, Autism, Biting, COVID 19, Depakote, Fred, risperdal, Straterra, Tenex, Wilma