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

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.

Another Poop Success

my 9 year old enco/megacolon gal felt an impending bowel movement coming! “I have a poop stuck in my butt” made me happy. It went in the toilet, y’all! Second time in 2 months. I still think we’re leaning towards cecostomy at this point, but I still take pleasure in knowing that 2 poops in the past 2 months got past her lack of RAIR and anal manometry doesn’t show the whole picture. Woot!

I caught my 9 year old Wilma FIDGETING (doing a poop dance)—- she NEVER EVER does that— her only toilet poops are scheduled (always happening after dinner when I TELL her to go) or enema-ed (if she doesn’t poop after dinner I HELP her poop after dinner). This one was enormous enough (thanks megacolon) that her lack of RAIR (failed two anal manometries) somehow picked this one up— she had to poop! It wasn’t even dinner time yet!  Did she register that? No— she still got a little in the underwear but I told her to run to the toilet and get the rest out and whammmmo! Go girlie! woot!

Apparently there is SOME nerve ending power there— it just has to be SUCH a massive bowel movement that it would explode the colon of almost anyone else for her to feel the urge.

Here’s a post I’m not sharing to all of my facebook friends.  If you’re following this blog you either know me super well and I’ve invited you here (and you’re good with poop posts), or you don’t know me at all because we’re anonymous here.🙂

Pharmacy Hour

Some nights I just want to chuck the risperdal, vitamin D, multivitamins, probiotics, fish oil, geodon, adderall, colace, NAC, tenex (gotta crush that one of course), and last week benadryl (but no more albuterol because I was told maybe THAT caused more aggression) (Fred was sick- he’s fine now, but every time he gets a cold he gets R.A.D.) ………..out the window and just tell the kids to go to bed. There are families out there who don’t have pharmacy hour between exercise time and bedtime– amazing.

Med update:

risperdal—–  WAS working well for Fred.  Until now.  He’s now at the highest dosage and he’s been suspended from school 5 days out of the past 6 weeks.  Emergency IEP meeting—- I asked for a 1:1 aide.  Denied because “he has more good days than bad”.  I asked that they stop suspending him because you can’t suspend impulse control into a kid with autism.  Denied.  I asked for another FBA– got THAT rolling.

Vitamin D—- Wilma is low.  Duh, we’re in Ohio.  Why is Fred not low?

Geodon— working fairly well— she’s having a good year.  Today I was told at her anal manometry that they’ve not usually done manometries on kids on such strong anti-psychotics.  yeah, ok.

Adderall— working super well—- she always does homework nicely, and always sits through class well, needing just a few breaks per day.

Tenex— just added it for the finger picking and forehead picking…… she gets one pimple and spreads it into a little colony by picking and picking.  Fun times.  Tried tenex before and it did nothing, but that was years ago.

Wilma failed her second anal manometry today.  This is after spinal MRI, Four xrays, countless cleanouts, countless cases of enemas, daily probiotics, daily fiber supplements, daily colace, and a partridge in a pear tree.

Basically we can clean out her colon (at least the bottom part right at the rectum with enemas) but we can’t KEEP it cleaned out and there is nothing we can do to clean out the top part of her intestines—– so we can get the encopresis under control if her megacolon is so out of control that she poops on command on a toilet once a day because it’s “poop time” (but has NO RAIR) (RAIR is the anal reflex that can be measured by manometry—– she failed her second manometry today— think of your knee getting hit by the reflex hammer and your leg automatically moves—– when anything is in her rectum, her anal reflex does nothing).
OR we can fix the megacolon by either cecostomy or perhaps going back to top down miralax type methods which will put her back in pullups and diahhrea 10-17 times a day. As a 9 year old, going back to pullups might be medically a good idea, but psychologically TERRIBLE. The manometry doc likes the idea of fixing the megacolon. The psychologist likes the idea of leaving the megacolon as is and keeping her with no RAIR and never knowing a poop is coming. (fine as long as she’s so regular that she NEVER poops other than poop time and NEVER gets sick with diahhrea—– every time she gets diahhrea she’s back in pullups and all bets are off—- we want her to go into adulthood using pullups every time she poops off schedule?)  The GI doc might be able to talked into cecostomy. I’ll keep you posted.
googling cecostomy and it doesn’t seem terrible but requires an hour on the toilet every night while the saline runs through. Wilma will enjoy all that ipad time— lol.

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