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

Archive for the ‘Fred’ 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?”

 

(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.

#youmightbeanautismparentif funnies

Time to put these in one place—- hilarious kids of mine.

 

#‎youmightbeanautismparentif‬ your 9 year old uses pick up lines on the cashier at the pharmacy. And she’s not even good looking. “Did you eat hot peppers? Because YOU SMOKIN’!”

#‎Youmightbeanautismparentif‬ your 7 year old SON is singing “my milkshake brings all the boys to the yard”  (this happened two years ago but needs to be categorized here)

#‎youmightbeanautismparentif‬ notations about what the Dow Jones industrial average is doing are written on your porch in sidewalk chalk by your 6 year old and you’re not phased. Oh…. and the house number of his girlfriend who lives a few streets away.  (this one from 3 years ago— entertained yet?)

#‎youmightbeanautismparentif‬ you tell your 6 year old to try to poop on the toilet (because YOU’RE trained to watch for the dance) and he responds with: “three eights equals point 375.” converting fractions to decimals? NO problem. Taking care of toileting needs? we’re getting there.

#‎YouMightBeAnAutismParentIf‬ at your first time at playground world, your kid is the one memorizing the prices of the play structures and avoiding the actual playing as much as possible. no slides, no rock climbing wall….. I DID get him into a couple swings and hammocks– but one look at the trampoline and he started freaking out.

#‎YouMightBeAnAutismParentIf‬ your kid can tell you that 6! = 720 (who taught him factorials???) but HAS to fall asleep with a particular stuffed animal in his mouth after at least an hour of jumping on the bed.

#‎YouMightBeAnAutismParentIf‬ your daughter prefers an MRI to a trip to Chuck E Cheese.

#‎YouMightBeAnAutismParentIf‬ you catch one twin picking the other’s nose.

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.

Rabbi Twerski: Letters To My Children

I COULD and will, at some point, blog about the fact that Fred has been suspended three days in the past month (and had another major incident that didn’t lead to suspension), and that these incidents didn’t lead to a new FBA/BIP before suspension and that I’ve got an emergency IEP meeting coming where I’ll ask for a one on one aide for him (and likely be told no)…. but I’m truly not in the mood.  I wasn’t GOING to blog during this get ready for Pesach kind of week, but my 10:00 pm Sunday phone appointment got rescheduled for tomorrow, and the rest of the house is asleep, so……  I choose to blog about Rabbi Twerski.  I’ve been wanting to share snippets of my favorite books on this blog and bit by bit I will.

These snippets are from Rabbi Abraham J. Twerski, M.D.’s “Letters To My Children”.  Things I want to remember and refer back to.

The Incident of The Whirlpool: As a medical director of a psych hospital, Rabbi Twerski was on constant call.  He had a two week vacation and decided on Hot Springs, Arkansas— no sight-seeing, no adventures, just REST.  He got into a whirlpool bath, and sat for…. five minutes.  He was told that the treatment was twenty five minutes.  He could not tolerate the peace and quiet and being alone with himself for more than five minutes.  “In your whirlpool, you were deprived of all possible diversions.  There was nothing to read, nothing to watch, nothing to listen to, and no one to talk to.  Being stripped of all diversions, you were left in the immediate company of yourself.  You were alone in a tiny room with someone you don’t like very much.  No wonder you were miserable.”  (negative self worth)

“I have often said, only half in jest, that there are four essentials to human life:  1) food and water, 2) clothing, 3) shelter, and 4) someone to blame.”  (accepting responsibility)

“…The salesman saw that the peasant had put the suit on over his farmer’s clothes and said, ‘My friend, you have to take off your old clothes.  No suit will fit properly if you wear it on top of your old clothes.’  We might wonder why we have difficulty achieving an enduring simchah.  It is because we are trying to put it on top of our former concept of simchah.  …….. we may better understand simchah by contrasting it with its opposite.  the opposite of simchah is despair.”  (on simchah)

“R’ Samson Raphael Hirsch made an important observation.  R’ Hirsch, among others, contends that when two Hebrew words are similar, their meanings are somehow related.  The words samei’ach (happiness) and tzomei’ach (growth) are almost identical.  This means that simchah requires growth.  There is a seed of simchah within every person that can be developed into happiness, but like a delicate plant, it must be cared for and given adequate water and nutrition.  Only then can it sprout.” (on simchah)

His third grade teacher speaking with him years later….. “Then I said to your mother, ‘Mrs. Twerski, I was sure that you were going to reprimand me for putting Abraham in that play.’ Your mother said, ‘If what we have given him at home is not strong enough to resist the effects of a non-Jewish holiday play, then we have totally failed’.”  (on public school– resistance to non Jewish influences)

More to come— this is a great book.

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