DME Fun

After many hours on hold and many phone calls over the past month, Wilma’s DME will no longer provide us with supplies for her cecostomy. Need a company willing tp provide AMT mini one (or Mickey assuming they’re interchangeable), gravity bags and connectors, and gauze. Apparently this isn’t the only company having trouble billing Wilma’s insurance for cecostomy supplies—- the companies only want to deal with enteral patients. So now I get to call all the DME companies again like I did the week she had surgery 6 years ago. YET ANOTHER REASON I’M EXCITED TO MOVE FORWARD WITH ANOTHER SURGERY for her to get rid of this darn cecostomy. Hoping for ileostomy within the next couple of years. In order to do that, we go back to the specialist in May and then move forward with colonoscopy and colonic manometry on an autistic 16 year old—– and this is the easier part of my life with two teens with special needs.

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It’s Been Five Days Since My Last Confession

Every time I email Fred’s team at the county board of DD how long it’s been since his last aggressive meltdown, I think about other religions and thier confessions….. “Father, it’s been five days since my last confession”.

It’s been two months since my last blog post and needless to say I have NOT been blogging every time I’ve gotten beaten to a pulp. There has been some police action (our mailman called the police while delivering our mail, even). But tonight I feel like blogging and I certainly can no longer vent on facebook thanks to certain people who screenshot and share my posts with people who are NOT my friends. So here, without using our names, I vent. If you know who I am, you’re likely close enough to me not to screenshot this and show the world.

Tonight’s aggressive episode was from 6:45 to 7:15.  It started because Wilma didn’t want to talk to her grandfather.  Fred was ticked off about it and in no time flat, attacked all 3 of us over and over.  He TRIED to calm down quite a few times but as usual if I had been alone with him it would have ended more quickly.  All of us were home.  Wilma claims he broke her glasses but she was overly dramatic about it and not letting me even get a glimpse of them so  she had yelled plenty of times about how she’s not going to school tomorrow or ever again until I fix her glasses.  Then while we ignored her she went all over the house looking for her old glasses and came up with a pair that I think is Fred’s old pair.  MAYBE in the morning she’ll put on her glasses which are most likely fine and go to school, but probably she’ll play hookey tomorrow and demand I get her glasses fixed immediately.     After Fred went to bed early, Wilma was trying and trying to get positive attention from us over and over.  Amazingly, he didn’t attack her again (I really thought he would by about the 17th time she knocked on our locked bedroom door to different annoying rhythms).

I’m TRYING to focus on how long it’s been  since our last major aggressive episode (a whopping few days but every day without a bite, punch, or strangle is a friggin success!).  Hubby, on the other hand isn’t  there.  Neither is Wilma.  Both of them yelled over and over and over that we need to call the police and I think they’re both extremely mad at me that I didn’t (they both know how to use a phone, by the way and clearly I’m NOT the boss of this house).

Happy Freakin Birthday

Sixteen years ago today, my mother in law (she should rest in peace) woke me up. It was the morning of a scheduled C section for twins who were transverse and breech, IUGR on one twin, the end of a pregnancy that included weeks and weeks of strict bedrest, insulin multiple times a day, meds to ward off preterm labor, cracked ribs, a VERY early effaced cervix, a hospitalization to check for preterm labor… man, I thought my pregnancy was eventful— I had NO IDEA what was coming with their childhood!

So my mother in law woke me up….. I asked her for 15 more minutes (I love to snooze when first woken up)…… she said “you had 8 more months for 15 more minutes. now you GET UP and give BIRTH TO MY GRANDCHILDREN!”

So I did. And when the doctors warned us that Wilma’s lung was about to collapse, I didn’t believe it for a minute. And when the doctors said “rush her to the NICU— time is of the essence!” I didn’t even HEAR it— I was too busy puking.

(that’s the story I re-tell each and every year. This year’s birthday, well…….)

Saturday morning Fred decided he wanted a particular pack of markers for his birthday.  One pack for home and one for school.  I told him I had already purchased all his birthday gifts and that he has about 10 packs of markers already and he attacked.  Later that day he received birthday money in the mail so I bought him the markers anyway Saturday night because that’s what he wanted with the money and he was happy again.  

Today (Monday) was supposed to be Wilma’s first day back at school but the bus was late so she refused to walk or let me drive her– she simply melted down completely and didn’t go to school  (this is rare these days because she usually walks if the bus is late)—- when Fred came home from school and learned that she had been home all day without access to computer, ipad or tv as her consequence for skipping school without permission, he immediately assumed that he wouldn’t get electronics and he went ballistic and attacked.  After this morning’s meltdown from Wilma, this afternoon’s meltdown  from Fred with a side dose of VIOLENCE, and a draining conversation with Fred’s psychiatrist (who doesn’t want me planning for him to do college, even online— I have big feelings about that which I’ll blog about…… NOT tonight), I’m tired.  Happy birthday to the twins. sigh.

Failing to Plan Is Planning to Fail

Me: “How did you manage to do so poorly in math?”

Wilma: “You can fail ANYTHING if you try hard enough.”

One of the Five Percenters

I’ve decided that five percent of the people in our fishbowl community are terrible people. 95 percent are WONDERFUL. So every time my hubby yells at me that we need to pack up our whole house and move (to WHERE, pray tell? We can’t afford a shoe box anywhere else!) I spend a lot of time trying to calm him down and convince him that most of the people here are really and truly wonderful and it’s just five percent ruining our experience. And quite frankly, we moved here in 2005 and from 2005 until at least 2009 or so things were GREAT. Since 2009 or so, things have gone downhill VERY quickly with particular people. One such person used to be our friend. We thought so, anyway. LOTS of incidents over the past few years have convinced us that he’s not just NOT our friend, but our actual enemy now.

Yesterday all four of us went to Walmart. Daring, I know. But we’ve HAD some successful Walmart trips lately and in fact, yesterday’s trip was GREAT for Wilma. For once, she did NOT instigate ANYTHING with Fred. But….. Fred had a moment. A loud, aggressive, the whole store turns to see how we’re going to handle THIS show kind of moment. Yes we got hurt. Yes it sucks. Yes, Walmart workers tried to TALK him down. Protip for those who work at stores…. if you see a 200 pound teenager punching and strangling his parent or caregiver, don’t try to TALK to the kid to tell him not to beat his mom. Get eye contact with the parent or caregiver and ask THEM if they need help. If they have the kid out in public, they’ve got training under their belt to do it as safely as possible—- or they don’t, but would like you not to make it worse, k? Dude at Walmart is lucky HE didn’t get slammed. I’m fine now, thanks— except for the adrenaline hangover– those are always fun. Walmart is back off the list for a while.

Anyhoo, our ahem…. FRENEMY……. saw the whole thing. Apparently. We did NOT see him there— we were trying to response block and get the situation under control before getting to the car. He told a neighbor of his to tell hubby that he will beat him up until we agree to leave this city. This is HIS city and we have created a great blemish on the community. If he were truly a friend, he or his wife would call us and ask how they can help. Hubby now has to go to minyan every day and daf every night walking on eggshells waiting for this butthead to beat him up. He’s already punched him before, but not (yet) beaten him to a pulp. We’ll see. This guy makes our community shine brightly, doesn’t he?

Pre Employment Nightmare

That’s the very last time I try to have these two take a class together at the same time. EVER. If we move forward with this set of classes (the pre-employment stuff which is insanely boring anyway and definitely geared to those with intellectual disabilities which these monkeys don’t have) I will GLADLY double my time invested to do each of them individually than attempt to be their 1:2 aide again. She rushes through the work, refuses to add anything to it when asked nicely, he throws a fit and tries to attack her, she gets ticked and wanders off, he bites me, and around and around we go. Not clear if these classes are required or not but I said I need a few months break before trying it again after this first round. If neither of them are ready to be allowed to participate in a work program next summer, so friggin be it. These classes WERE in person but of course he punched the instructor so the last sessions of this round were on zoom so *I’d* be the only one to get punched and bitten.

Life on Zoom and Facetime

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.

Wilma’s Poopy Life

Wilma is 15 now and had her cecostomy placed five years ago at age 10.

No regrets, but in our case I wish we’d done colonic manometry first and not just anal manometry. Because in our case, the encopresis is controlled via cecostomy (we force a BM out every night on the toilet via cecostomy flush) but the megacolon is still super super severe and we should have ideally gone straight to ileostomy or re-sectioning rather than spend five years on cecostomy first– she COULD go on forever with cecostomy but she still has no anal reflex— NO feeling of an oncoming BM so it’s not like cecostomy is healing her colon or shrinking it at all….. it’s just keeping her out of diapers. Also she has ZERO interest in learning how to measure the glycerin and saline and get it in the gravity bag and get the bag connected etc etc without my help— only me— she won’t even let my hubby do it…. so if she ever wants to move out of this house and away from me (PLEASE! lol)

So soon (within the next year ish?) we’ll do colonic manometry and colonoscopy and move towards re-section or ileostomy and focus more on colonic motility than on just keeping her clean. Fun times. My guess is that if we do ileostomy she’ll be much more comfortable changing and emptying the bag than she would be learning the intracacies of connecting to the cecostomy bag every night— it will give her a better quality of life– independence— ability to go away to college or live on her own someday. Of course, if re-sectioning and pooping in a toilet someday with no help whatsoever is a possibility (I sincerely doubt it) we’ll explore that as well!

With the cecostomy it’s measuring and all the flow getting stuck and connecting the bag to the connector to the body. With the ileostomy it’s popping it off and popping a new one one…. still a pain and gross, but it seems less involved to her. So…. we’ll see.

911

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.

Work Work Work

How a typical teen gets a summer job: apply.

How my teens get summer jobs NEXT summer: start years ago with the board of developmental disabilities getting services. Times two. Get referred in 9th grade to the Office of Ohioans with Disabilities. Do intake with OOD — times two—- and choose an agency to provide services. Meet with the agency— times two— to do intake for THEM. Set up many sessions—- times two—- for the twins to learn job skills, self advocacy skills, job exploration counseling, workplace readiness training….. and then apply for supported work programs for the next summer eventually— times two.

Reason number 873 I don’t get diddley poop done. NOT complaining— we’re blessed this program exists.