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

Archive for the ‘Wilma’ Category

Playing Catch Up

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.

 

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ABA Update

One of Wilma’s therapists is off our case for good and it’s a welcome relief.  Already have someone else in place a week later.

If you want to work with kids with autism and you’re asked to give 2 weeks notice of an occasional absence, and your job with us is 4 hours a week, you can’t be absent at least once every other week and give less than a week’s notice about two week absences over and over AND complain to your family about our family. (HIPPA anyone?) Don’t screw with my kid’s’ mental health.

Wilma’s other therapist is growing on us and Freds’s therapist is really quite good. Their supervisor is EXCELLENT—- so I think with this change we’re in a good place.

Summer. Autism Doesn’t Take a Break

There are far too many families dealing with similar crapola….. 9:30 pm, both kids are sleeping, and I’m cooking Shabbos because I’m out all day tomorrow. (I wrote this Thursday night).  All of a sudden I hear a sweet “can I come downstairs and tell you something very quickly?” I say sure, but then please go back to sleep. She tells me she has a loose tooth and she wants me to look in her mouth— I had no idea she’d start screaming her head off. She’s terrified it’s an adult tooth. I have no idea whether it’s a kid tooth or adult tooth— I can BARELY get in there— I got a half second peek before she started screaming her head off, waking her brother and then I was treated to another lovely double meltdown right as I’m supposed to be making Shabbos and my husband is out at daf. yay. Full physical prompting up the stairs with a kid who weighs 110 pounds isn’t fun. Guaranteed that when my husband is in charge of getting them on the camp van tomorrow she’ll scream at him that she’s not going to camp and she demands an emergency dentist appointment. If she’ll calmly simply let me LOOK…… but nothing ever happens calmly around here. Autism, thanks for striking again– hadn’t seen ya in a couple of hours.

And…. Well we made it almost to week 4 without getting suspended from camp. Fred will be home with us Monday without his sister. Not. A. Deterrent.

And….

Wilma: “can I call the police department and let them know that fireworks can’t go off tonight because I have daycamp in the morning and I need to sleep?” Me: “put on your fan and let’s hope for the best.”

Every year I say that noise free fireworks need to become a thing. Autism, PTSD, veterans, pets….. there are a lot of reasons not to have big loud bangs after bedtime, yo.

And…. Why is the guy who gets ticked off at my husband that he doesn’t bring our son to synagogue in the evenings (after he likes to be asleep) the same guy who’d be royally pissed off at our son’s behavior if he did?

Catching You Up On The Hilarity Around Here

#youmightbeanautismparentif your ten year old, at 6:45 am, is working on memorizing all the counties of Texas.

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Me rushing Fred through the bath time process…. “ok strip and get in the tub”. Fred: “but I don’t want to become a stripper….”

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Me to Wilma: “I’m not going to want you in my bed watching the news tonight at 10:30— sleep, please.” My smartass ten year old: “I don’t think the news is on tonight– it’s going to be football.”

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#youmightbeanautismparentif your ten year old can calculate sin cos and tan but still manage to put his underwear on backwards.

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one thing we’re working on in ABA is dinnertime conversation—- instead just yammering about whatever is on our own mind, we are supposed to ask each other questions. How was your day? (for example) and ask questions about what someone just said, etc.

So Wilma just came home and with no prompting asked “how was your day?” I started to answer and she said “I asked you now so I won’t need to ask you during dinner…..” HAH!

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#youmightbeanautismparentif you’re woken up on Shabbos to a ten year old perfectly singing an Irish drinking song in your ear.

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In discussing with Miss thang that her cecostomy flushes haven’t been effective for the past couple of days, she said and I quote…. “my colon is on a coffee break”.

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#youmightbeanautismparentif your kid goes to mincha with Abba, davens nicely, then waits till the end to announce that the prayers are about loving HaShem….. breaking into Whitney Houston’s “I Will Always Love You” in front of all the kollel guys.

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Me: “when are you going to start bringing home homework this year?” Fred: “I don’t give a monkey’s gluteus maximus”.

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“Mommy, can I play with the computer?” “No, sorry.” “Why not?” “You were hitting and screaming”. “But mommy, aren’t you used to it by now?”

Tween Girl Crazies

My worst nightmare has come true……  encopresis trouble along with heavy periods along with a 10 year old girl who is simply not yet capable of cleaning herself after pooping herself.  Poop AND BLOOD encrusted pubic hair, yay.

She’s ten and a half.  She’s on period #2 now.  First one was just three days and yup– it was right about a month ago.  This one?  Well, we bought the pads I haven’t bought myself in years— the extra long ones.  (I get 1-2 periods a year and they’re light!) But much of this period she’s in pullups not panties.  Because….. enco.  We were going to go out today (school doesn’t start till next week) but since she’s filled her pullup twice already this morning, home we stay.

The things I don’t share freely on facebook.

I’m in Nursing School!

Yeah, no, not really.  I have ZERO spare money and ZERO spare time, plus a master’s in education I’m not even using.

I just mean that in the past month, I’ve learned about appendicostomies, cecostomies, exudate, fibrin, and all sorts of fun stuff!

Wilma had her cecostomy on January 16th, a month ago.  Technically, an appendicostomy— though she has an AMT mini one button at her appendix instead of a tube in her belly button. Don’t ask me how the tube goes through the appendix to the colon or why—- I’m not on THAT semester yet.  What I DO know is that after the first few flushes and first few tweaks of recipes (some kids need glycerin, some don’t…. some need golytely, some don’t…. some need a lot more saline than others….. sometimes you feel like a nut, sometimes you don’t)…… every flush started going beautifully. With the flush solution, she feels a bit of an urge—–  after the first flush (every flush is at least two flushes— one with glycerin and then one without)– -she often fidgets— wow!  So after the glycerin/saline mix is when I have her sit on the toilet.  Whammo.  No more poop for two days.  Perfectly clean underwear at school.  What goes in the toilet….. GETS FLUSHED DOWN THE TOILET!  In the final year before cecostomy, I couldn’t flush her stuff down the toilet— -whatever I enema-ed out of her into the toilet had to be removed and thrown out.  Megacolon.  So the point of this is to heal her megacolon— -if her stuff isn’t thick enough to clog the toilet, we’re on the right track.  The other point of this is to keep her clean at school and only pooping at home since she never has an urge (except right after a flush apparently!)—- and we’re on the right track there too.

I could write pages about how difficult it was to track down a dme company who would provide gravity bags, connector tubes, extra buttons…… on Wilma’s insurance for this type of surgery.  I won’t.  You’re welcome.  I could also write pages about how insurance won’t cover glycerin (don’t worry, it’s inexpensive), and how a case of saline is heavy and cannot be delivered— I must go pick it up (from the hospital, so I can pop it in a wheelchair— once a month I get to WHEEL a case of saline out of the hospital pharmacy… wheee!).  I won’t do that either.

What’s unusual and a little fun is that her healing is quite unusual.  For the first couple of weeks after surgery, she had stitches.  I couldn’t move the button.  I could clean around it, but couldn’t rotate it to see the hole underneath.  When we went back to the hospital to get the stitches out, it was noted that one stitch was gone (I had no idea even though I was cleaning it daily) and the button and other stitches had tugged the skin in the wrong direction just enough that the appendix dropped a bit and now she’s got a nice big bloody raw crater under the button.  That’s going to be some scar.  Anyhoo….. now I rotate the button five times a day, cleaning in the crater, picking the exudate and fibrin out with little picker thingies, drying well, packing the crater with gauze, and gauzing around the whole button.  ok, not five times a day— on a school day the school nurse does it once a day.  ok, not even four times a day— I do it before school, after school, and before bed—  I just don’t have it in me to force the issue one more time.  Nope, insurance doesn’t cover enough gauze.  Yes, I’m using a ton every day.  No, the hospital refuses to give us enough.  Whatever, that’s inexpensive too.  It’s healing very slowly— I had no idea how long an open raw bloody wound could just stay open and packed with gauze—  what’s fun is the exudate and fibrin—- it LOOKS like infection— it’s fascinating to remove the yellow goo a million times a day, show the nurse at every appointment and have her tell me that’s how we WANT it to look and it’s NOT infected.  Every now and then Wilma will peek at the gauze and be totally grossed out.  Usually she lies on her bed with the ipad in front of her face and I get the fun job. The hospital had us coming back twice a week, then once a week, and yesterday we were finally bumped to every two weeks.  hooray!  So if I don’t post here a lot, I’m busy packing wounds with gauze, running glycerin and saline through a colon, checking output against the bristol scale, and… oh by the way, still doing a bit of direct sales (and a bit of babysitting too, because my friend needed me and hey– it’s fun!).

Today for the first time since surgery a month ago, she couldn’t make it through the whole day at school.  Stomach pain.  A typical kid would sit on the toilet and poop.  Her poops really don’t come anymore at all without a rectal enema or a flush.  And who knows if it was an actual urge to poop (doubtful) or just tummy pain due to all this stuff running through her colon.  I took her home and flushed her and let her nap.  She’s better now.  That will happen once in a while but otherwise we’ve been lucky—- she doesn’t have to clamp for 10-15 minutes during the flush due to cramps, she doesn’t leak outside of flush time (I mean poop wise— she DEFINITELY leaks yellow gunk from the crater), and the wound healing is going okay.

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?”

 

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