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

Friends

I just find this hilarious.

Advertisements

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?”

 

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!

Fourth Grade

Haven’t written in a while because as usual, August was pure hell.  I HATE August.  It’s the end of summer and all they need is to be apart from each other—- he is soooooo sick of her every August.  Then they go back to school and all is right with the world.  Until he gets suspended…. again.  To review— he was suspended five days at the end of third grade for three separate incidents.  We upped the meds again over the summer….. now he’s on the highest dosage of risperdal for his weight… PLUS we added Seroquel (with the hope that if the Seroquel gets to a good dosage we can wean down the risperdal).  Nope—- seeing the psych again on Monday—- he is NOT. DOING.  WELL.  Mid September and he’s already been suspended for two days of fourth grade.  So I wrote a letter (see below) and had an emergency meeting.  Trying NOT to get to manifestation determination.  Trying NOT to go to due process.  Trying NOT to get him placed in an autism school.  Just trying to get him more support at the school he loves.  The meeting was this morning.  Short on time now so I’ll post meeting results another time (I hope tomorrow)… but here’s the letter.  🙂

September 21, 2016

(Fred), a 4th grade student on an IEP at (school), was suspended 5 days at the end of third grade—2 of those days were in school suspension.  He was suspended for impulse control and aggression issues— these are known issues in his ETR and IEP.  Some years are better, some years are more challenging.  Once again, he was suspended at the beginning of fourth grade for two days.  At the end of third grade I requested and was denied a 1:1 aide for him for the safety of himself and others in the building because he has more good days than bad days.  I also requested that he not be suspended anymore for issues that are clearly representative of his diagnosis.  I am once again requesting the following:

  • That he not be suspended for impulse control or aggression issues. We did an updated FBA— now let’s make a BIP based on the recommendations that note 8-10 things we can do with him in the building (sensory room, walk outside with his aide, write an apology letter, role play with Mrs. R what he can do instead, etc).  Suspension for him is NOT A DETERRENT.  He ENJOYS being suspended.  His favorite thing in the world is to be home without his sister, away from the chaos of school.  He is overwhelmed by all of the other students and we never know when aggression will strike.  Further, I predict he will continue to act out IN ORDER TO try to get suspended again.  Suspension gives the school a break from him but does NOTHING for HIM.  Suspension is just showing him that school can’t deal with him when he acts up, that he’s BAD and should be kicked to the curb when his behaviors hit hard.  Do we suspend a blind student for needing Braille or a student who can’t walk for needing a wheelchair?  He needs more behavioral support, clearly.

 

  • That he have a 1:1 aide who is a registered behavior technician (rBT). Mrs R and Ms. H are wonderful but they are not superglued to him 100% of every day because there are other students on their case load.  Each act of aggression is proving that Fred is becoming more and more of a danger to himself and others.  My understanding is that last Friday’s incident happened when Mrs. M was the only adult in the room.  Clearly, it’s not safe for any teacher or therapist to be alone with a group when the group includes Fred.  We cannot predict when aggression will hit.  Putting a 1:1 aide on him who has experience with autism behaviors, can take data, and can be supervised by a BCBA will allow him to remain in the school he knows and loves.  I don’t WANT him to move to an autism school—- he and I are very happy with (school), but he needs more support. Giving him a 1:1 aide will certainly be less expensive to the district than an alternative placement in a private school.  My hope is that this necessity is temporary and after some time of 1:1 support we can scale back if his behaviors stabilize.  I am concerned for the teachers, therapists, and other students in the building.  I know how it feels to be “Fred-ed”, and he is getting bigger and stronger.  We can not suspend impulse control into him, but we can provide much needed support for his growing needs.

Please refer back to the Social/Emotional/Behavior section of his ETR (starts on Page 12), a document compiled by the district, and see the frequently observed behaviors from the Autism Rating Scale that he has been observed/reported to engage in and how this relates to the situation and also the description of educational needs and how they relate to the situation.  Clearly, the issues he is having are stemming from his diagnosis.  He deserves a free and APPROPRIATE education.  If he keeps getting suspended because of lacking support for his growing behaviors, how is this appropriate?

With the greatest respect for (school)’s team,

Me (Fred’s mom)

 

On the way to probable cecostomy our latest protocol has Wilma leaking like a faucet. My 9 year old is back in pullups and I go into public bathroom stalls with her to see if she needs to be changed. I carry adult size pullups and wipes in my purse. I just wanted to share here and say….. argh! Thanks. That’s all.

Nervous and excited about the possibility of cecostomy.  On the one hand, she will likely ONLY poop in the evening– in a toilet— during the time we run the flush through the tubing.  On the other hand, it’s surgery— it’s more drastic, and it might be difficult to get used to the lifestyle changes needed (an hour a day of sitting on the toilet, dealing with the tube….. oy.

During this protocol (NIGHTLY ENEMAS— EVERY friggin night….), the GI specialist is out of town.  For a month.  Out of the country.  Yeah, fun times.

Tag Cloud