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

Archive for the ‘Aggression’ Category

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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(Not The Only) IEP Meeting Where I Cried About My Son’s Behaviors

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)

 

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.

Suspension

Fred got suspended for reaching into a (male) student’s pants and underpants to touch him inappropriately.  Just in the past few weeks, he looked up inappropriate videos on the school computer, got suspended for violence, and now this thing that’s just……. *sigh*—– yeah it’s bad. The roller coaster of these kids and their issues is intense.  I cannot believe how FAR he went this time.

Suspended kid really feels suspension is a complete deterrent. (not) He was home without his sister. Even though I’m not taking him anywhere fun  (yup, he asked), and even though he doesn’t get to stim on the ipad/tv etc because I’m a mean mom who is making him play outside and draw, he’s pretty much in 7th heaven—- a house without Wilma. Want to give my kid a consequence that makes sense? Send him to Wilma’s school for the day and make him be with her all day long.

So tomorrow will be his third day of suspension in the past month.  School went straight to suspension, no stopping at FBA/BIP even though his last one was two years ago.  On the one hand, they need to show the other students/ parents that even though Fred has special needs he gets CONSEQUENCES for his actions.  On the other hand, suspension is not a deterrent.  If you ask him WHY he got suspended, he says “for screaming”.  ugh.  Emergency IEP meeting on the 26th.  I’ll be asking for a one on one aide.  Spoiler alert:  I’ll be told no.

Seriously?

I haven’t blogged since May.  Seriously?

Here’s what you missed.  Wilma KILLED my finger.  Got 3 xrays– it wasn’t broken– “just” a bad sprain.  But that bad sprain hurt worse than many of the broken bones I’ve had in my life (all my broken bones have been on purpose through surgery- never by accident– funny that.)  It’s been about 10 weeks now and I’m starting to have days where I don’t notice the pain at all.  Until I try to bend it.  ugh.

My mother in law died.  She had battled lupus for over a decade valiantly— we all knew this was coming.  Except that we didn’t.  We all thought we’d get another year or two out of her— everytime she was hospitalized we figured she’d make it back to the nursing home and we’d still have more time.  So we were all very shaken up.  She had gotten out of the nursing home after 10 months and had been living at home for 35 days when she was hospitalized for a listeria infection (she was prone to every infection).  She got pneumonia and respiratory distress and we STILL thought we weren’t losing her. But then the internal bleeding started and the doctors stopped all medications except for morphine and told my father in law that the time was coming that week.

Shiva was surreal.  In our home we had a million chairs, an Aron and Torah, tables, siddurim, a candle burning for a week, minyanim three times a day, and the kids were out of sorts to say the least.  Picture me upstairs every morning at 7:00 am saying “shhhhh the men are trying to daven– you CANNOT yell tushy!”.  The community cooked dinners for us for a week (good thing— I had to do all the camp schlepping, all the laundry, all the dishes, EVERYTHING— hubby wasn’t allowed out of the chair for a week except to go to the bathroom).  If you’re unfamiliar with Orthodox Jewish mourning customs I encourage you to google.  It’s fascinating.  Comforting and CRAZY at the same time.  I don’t remember five minutes of calm that week.  Whenever a minyan wasn’t happening, visitors were.

Camp SUCKED this summer and the kids aren’t going back next year.  I mean it this time.  Fred got Hand Foot and Mouth disease on a Friday (no camp on Fridays) so we kept him home from camp that Monday.  Camp nurse calls to send Wilma home.  She’d been exposed.  It’s not the plague, people.  So she said I’d need a doctor’s note to send both kids back the next day.  Rushed them both to the doctor on Monday afternoon after getting her.  Got the note— she didn’t have it and he was no longer contagious.  Sent them both Tuesday.  Got the call again— they didn’t like the look of his rash and he needed to stay home for a week.  So I kept her home on Monday for being exposed, and kept him home for a week for a no longer contagious rash.  That’s the kind of summer we had with this place.  The DUMBEST projects came home after they asked me for an explanation of where they are academically and I gave it to them in writing—- they had them doing preschool level worksheets.  Daily.  And watching movies.  Daily.  There is exactly one AFFORDABLE special needs camp on this side of town and I’m DONE with it.  Next summer– camp Mommy?  ugh.  There was a month between camp and school (that month ends this coming Monday) and I feel like a truck ran me over.  In order to send them to a “typical” camp I’d have to come up with tuition for 2 kids and $$$ for two one on one aides for 2 kids.  In order to send them to another special needs camp I’d have to pay more money or shlepp them to the other side of town.

But what’s on my mind this week is the title of this post…. .SERIOUSLY?  Just the STUPID ridiculous things people have said to us this summer about our kids and/or about my mother in law dying.  Here’s a fun sampling.  PS— the ones that involve Orthodox Jews?  I’ve been asked to stop posting about those on facebook because of Chillul HaShem.  You know what’s Chillul HaShem in my book?  People not being aware that people of all colors, shapes, sizes, and yes, religions can be ASSHOLES.  Sorry for the language but it’s my blog and I’ve got to curse.  Read on.

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1)  When my husband takes one of our kids for a walk in the special needs stroller and walks by a particular house, a bratty kid (unsupervised of course) says….  “WALK MUCH?”   Another group of kids (with the father right there not saying anything because he can’t stand our kids even more than his children) says….  “baby baby…. goo goo gaaa gaaaa”.  Yep, fellow Orthodox Jews.

2)  When my husband asked a man at the zoo to please stop staying at our son (who was screaming “I AM A PSYCHO!”), he got punched.  HARD.  In the stomach.  (my husband, not my son.  But still!)

3)  Right to my husband’s face  “is your son still a freak?”

4)  At synagogue my husband was told he shouldn’t say kaddish for his mother because she didn’t believe in God.    Nobody said anything because the person who said it learns full time (in Orthodox Judaism the men who learn full time and don’t work for a living are held to a very high regard by many.  Me personally?  I’m FINE with men learning full time ***IF*** they can do it without Medicaid, food stamps, WIC, section 8, and all the rest because sucking off the government is not “making it” financially nor is it supporting your wife and family.)  So when someone saves for years in order to enter Kollel I think it’s wonderful.  How often does THAT happen?!?!

5)  I think the extreme idiot award goes to the person calling himself an Orthodox Jew who told my husband his mother died because he shaved off his beard like a goy (deragatory word for non-Jew). (my husband follows Rabbi Moshe Feinstein who wrote about how men living in America can shave their beards for particular reasons while being Orthodox Jews).

6)  During shiva, a tzedakah organization called for money. Hubby said no, he’s sitting shiva. They called back and left a message and an email. The email said that she died SO THAT he’d have a chance to donate to a worthy organization—- guess who is never getting a penny from us!??!?!? what is WITH people?

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That’s all for now– just needed to get those tidbits off my chest.  I have PLENTY more to say on various topics so I WILL try to blog more frequently…….

 

 

THIS is the Awareness We Need For Autism Awareness Month

THIS is what we should be talking about.  Not lighting it up blue, not talking about how neurological differences are au-some…. THIS is what we should be talking about.  I thank my lucky stars each day that no noses have been broken yet in our home— nobody has been hospitalized yet.  My twins, indeed, are the HIGHEST functioning children of parents in this facebook group to which my friend refers in her post.  But I fear for the future…….  if things worsen and my kids get bigger and stronger than me.  I know for certain that my son would have been put in residential treatment years ago if not for the therapies and medications we’ve tried thus far.  My goal in life is to keep my kids home with me, regardless of well meaning friends’ comments “you can’t live like that!  Send them to live in a treatment facility!”

THIS is an au-some post.  Yes, the term au-some is fine.  Just don’t tell me that autism is au-some because it’s NOT.

 

 

Autism Awareness

Autism Awareness (Photo credit: Wikipedia)

 

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