Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for the ‘Wilma’ Category

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?

Stay Away From Us!

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…..

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…..

Freaking Homeschooling Some More

Wilma will start the school year remotely— her district bowed to parent pressure tonight. She and her brother have been home all day every day since early March and her being in school at least two days a week was like a light at the end of an insane tunnel.  Still no idea what Fred’s school will do.
 
Her being home for school is just long naps, refusal to work, and complaints.  Her being home in the summer is just long naps, refusal to do activities I suggest, and complaints.  Any time I ignore her and try to get on a phone or computer to get something done other than give her attention, she’s got an arsenal of jokes to tell or totally insane stories.  And she’s by FAR the easier twin now.

Agression Regression

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.

I Need Another Surgery

This one will be #14 I think (I’m losing count).  This will be very painful, but a short recovery from what I understand.  This one is NOT kidney related.  Even though I’m sort of anonymous here, some of you do know who I am and I’m not sure I want to share surgery details this time– I’ll think about it.  If you know me super well, message me on facebook and I’ll tell you— I just don’t think I should put it out there for the world.  It’s a problem that I tried managing with medication and the medication made the pain  significantly better….. but caused another major problem.  I’ll see the surgeon on March 12th and then I’ll schedule.  Fun times.  During my hospital  VACAY (I get to NAP!  I get a break from chores and working on Wilma’s colon!) I will insist that hubby once again do Wilma’s colon— and once again he will need training because he hasn’t done it since once the last time I had surgery.  Remember when I said we’d only be using a cecostomy for a couple of years?  I lied.  There’s no way we’ll even TRY to wean until halfway through high school at this point according to the specialist.

Wilma Isn’t Pregnant

Wilma had a doctor appointment and as a requirement for one of her medications they needed to do a pregnancy test. So my autistic 12 year old was YELLING “I will NOT pee in a cup! I AM NOT PREGNANT!” at the pediatrician’s office. She got permission not to pee in a cup (I played the autism card and the there is just NO WAY card) and she calmed down. But then she wrote all over the butcher paper on the exam table…… “I am not pregnant. I will not pee in a cup. Peeing in a cup is gross.” Life is always interesting with these two.

Part Two: Bas Mitzvah Story

To catch you up in case you missed the last post:  I threw my daughter a Bas Mitzvah party a couple of weeks ago. It was called for 5:00 pm to 7:00 pm. From 5:00 to 6:00, things were GREAT. My husband and I gave little speeches, my kids were eating and enjoying, and everyone was schmoozing and the weather was perfect.

 

Part Two……  (insert ominous music here)…… Right around 6:15 pm, my daughter AND my son (one always sets off the other) decided to let their autism flags fly. The tears, the screaming, the running off— it all started in full force fairly quickly. Though there were a few stares of complete disbelief (who can blame them), most of the people there quietly mobilized. By 6:40, all tables were stripped, food was put away, everything was in one place to put in cars, and people were leaving. I hadn’t lifted a finger except to response block my children and try to sing to one and have my husband take the other away (tried to have him take both home but failed there– he was NOT in a good place at that point)….. I felt badly because a few people showed up at 6:30 and one person showed up at 7:00—- so they didn’t get to eat or schmooze— they just got to witness the total chaos. When the kids were in bed that night and a friend came over for leftover cake, I checked my phone—– 8 texts from people who were there asking if I was ok and if the kids were ok. Amazing. If you didn’t know the hours of therapy and doc appts and medication changes (today we saw a new psychiatrist— YAY!) we’ve been through— you would simply see a girl being a total BRAT at her own party—- setting off her twin brother— and creating total insanity. But without fanfare, people from all aspects of my kids’ life came together to clean up the party and drive stuff back to my house. Autism won that night but it was also such a kiddush HaShem— people cleaning up, throwing out trash, putting everything in cars, and quite honestly, after a double autism meltdown it’s the adults who get the adrenaline hangover—- all my kids will remember is the friends who came, how much fun the first hour was, and memories from the fun they had (I hope!). Now since she’s a twin and I did her party 6 months late, I have a BAR Mitzvah in January—- catastrophe can’t possibly hit our simchos twice, so it should be lovely! Davening. 🙂

It’s Her Party and She’ll Have An Autism Meltdown If She Wants To

Of my twins, Wilma is typically the “higher functioning” of the two, autism wise.  She’s the one who didn’t get kicked out of public school.  She’s the one who can have a conversation with you with relative ease even if she doesn’t look at you.  She’s the one who can generally run an errand or walk through the neighborhood without a horror show ALWAYS happening.  Her meltdowns are severe, but relatively rare these days.  Except….. at her own Bas Mitzvah party.

I planned a 5:00 pm to 7:00 pm dinner event in  a park, half a year after she turned 12, so that we could be outdoors with fresh air, with a playground to which my kids could escape (and all of their friends with special needs), and so that it could be informal (read:  budget of $500 and not a penny more).  I rented the covered picnic pavillion, paid for $200 worth of pizza, an $80 cake, bought $100 worth of sodas and papergoods, sent out the facebook invites and the actual written invites to the few facebook holdouts, and prayed.  I prayed a lot.  I had her write a speech.  It was short and sweet, much like Wilma herself.  *I* wrote a speech—- just a few “Wilma-isms” I’ve collected over the years.  I allowed her (and Fred) to wear whatever they wanted.

The first hour of the party was perfect.  Gorgeous weather, fun with friends, I gave my speech and my husband gave his.  Wilma didn’t want to give hers.  She pushed me and yelled.  I kept a smile on my face and offered to give it for her.  She refused.  A few minutes later she went to the bathroom.  I QUICKLY gave her speech while she was in the bathroom and told the 50 people present “shh don’t tell!”  She had no idea, so even that went off without a hitch.  Non Jewish public school friends were schmoozing with Jewish community friends—- beautiful (and so rare in our community!)

In my next post I’ll describe the second hour of the party.  It was a teeny bit different than the first part.  It’s 1:20 am now— have you noticed I haven’t been making the time to blog?  Life is busy.  This party happened a week ago already.  Suffice it to say—– I needed that week to recover.  More to come!

 

What Is ABA?

Some of you know that both of my kids do “ABA” for multiple hours a week but have no idea what that means. I like this video because it shows a real life example of a child being prompted to put his shoes away, put away groceries, pack his lunch, and walk the dog.

In our house, real life examples are different than this and include playing a game by the rules from beginning to end, having a conversation that starts, flows nicely, and stops, doing math homework with minimal screaming (Wilma), practicing piano with minimal screaming (Fred), riding a bike while paying attention to cars coming out of driveways, going to the store and paying for items, appropriately greeting visitors who come to the door, clearing the table, putting away laundry, sweeping, changing trash bags, etc etc etc. Wilma likes to help me cook. Both kids worked very hard on shoe tying and mastered it. Wilma worked very hard on the dinnertime skill of not interrupting. Fred worked very hard on the dinnertime skill of using utensils and not hands. Many of these things are what neurotypical kids pick up naturally but our kids need extra support. For us, ABA is a structured way to give them that extra support. Fred likes to work for candy. Wilma most recently worked for a little purse from Justice. Both earn money— Fred likes to spend his on hotwheels and Wilma likes to spend hers on virtual currency in the “Roblox” game.

Hope that was a good explanation!

 

https://blog.theautismsite.com/overcoming-struggles-of-down-syndrome-and-autism/?utm_source=aut-autaware&utm_medium=social-fb&utm_content=link&utm_campaign=overcoming-struggles-of-down-syndrome-and-autism&utm_term=5876822&origin=aut-autaware_social_fb_link_overcoming-struggles-of-down-syndrome-and-autism

 

 

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