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

Archive for the ‘MFE/ETR’ Category

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)

 

Dayenu

In Judaism we have a special song we sing at Passover time— if God had given us just this it would have been have been enough.  If he had given us this but not that it would have been enough.  Sometimes when I vent I turn it around.

I’m a bit discouraged this week and just need to throw up my hands and say Dayenu.

If I had twins, Dayenu.

If I had special needs twins, Dayenu.

If I had to work because we can’t survive on hubby’s income alone, Dayenu.

If I had to work evenings because daytime is chewed up by paperwork and meetings, Dayenu.

If I had to do laundry, clean, cook, pay bills, Dayenu.

If I had to go to IEP meetings, ETR meetings, FBA meetings, Dayenu.

If I had to balance the schedules of the outreach worker from the autism center, the outreach worker from the behavior center, the outreach worker from the board of developmental disabilities, Dayenu.

If I had to balance the schedules of the neurologists, psychiatrist, behavior therapist, speech therapist, developmental pediatrician, Dayenu.  (we’re not currently doing OT or PT outside of school hours— they’re six years old and don’t get home till after 4:00 for pete’s sake—- there are only four days a week we can cram after school therapies!)

If I applied for SSI and got denied, Dayenu.  If I re-applied with a lawyer and am killing lots of trees in prep for a second denial and subsequent appeal and court date, Dayenu.

If I HATE the behavior center and am required by three different psychiatrists to take my kids there so I fill out an hour’s worth of paperwork for a new developmental pediatrician so that we can quit the behavior center therapist, outreach worker, and psychiatrist and the new developmental ped can handle our med management, Dayenu.

If I had a daughter who poops herself five or six times most days after school on purpose and NEVER uses a toilet at age six, Dayenu.

If said daughter has a GI doc who claims she’s constipated and is giving her miralax and metamucil protocol each day, Dayenu.

If I have to play the medication roulette game between clonidine, tenex, abilify, focalin, vyvanse for two different children with three different psychiatrists and a developmental pediatrician, Dayenu.

If I have to survive double autism meltdowns in public complete with biting, screaming, flopping and refusing to move, stares from strangers, and unsolicited parenting advice, Dayenu.

If I have to have the school district tell me that they don’t need ABA (and insurance won’t pay for it either), Dayenu.

If I have to have the school district tell me that they’re too high functioning to be sent by the district to an autism school and they can handle them at a regular public school, Dayenu.

If I’d rather send them to a Jewish day school but know that I can’t possibly give up the services we’re getting at public school and have to figure out how to get Judaism into them outside of school hours, Dayenu.

If I, in an effort to save money, want to bring a VERY high rent payment down to a reasonable mortgage payment and am thinking about purchasing our first home at age 39, Dayenu.

If to purchase said home, we need down payment assistance and to qualify to receive the downpayment assistance I have to take a course which requires me to cancel the twins’ after school appointments for an entire week and find an after school babysitter, Dayenu.

If I have to prepare for Purim, Dayenu.

If I have to prepare for Passover, Dayenu.

But put all of them together and you have one very tired work at home mommy.

Vent over.

Tree Killing

The kids are home from school for two weeks for winter break.  I still have to make an income, do some housework, and do….. the paperwork.  I’m not going to say it’s been EASY, but Wilma’s new medication is… dare I say it……. WORKING!  She’s had a couple of massive, horrific temper tantrums….. but just a couple!  There are DAYS that go by with just NORMAL five year old temper tantrums (you all know the difference between a normal five year old tantrumming, and an AUTISM tantrum, right?  My landlord doesn’t— he came to get the rent tonight and he spent five minutes pontificating how his grandchildren also have temper tantrums—- tantrums don’t mean autism…. um helllloooooo.  I LOVE my landlord in every other way so I’m not going to torture him by making him read this blog— but I’m tempted.)

I digress.

Yesterday I hired a babysitter for four hours so that I could photocopy:

Wilma’s ETR x2

Fred’s ETR x2

Wilma’s IEP x2

Fred’s IEP x2

Wilma’s adhd paperwork x2

Wilma’s autism paperwork x2

Wilma’s special speech eval paperwork x2

Fred’s autism paperwork x2

 

And then stand at office max dividing it all up and stapling it all………  1 copy of each for the new developmental pediatrician.  Do we NEED a developmental pediatrician?  No….. we have two neurologists, a psychiatrist (same one for both twins now— THAT’S new!), a therapist, an outreach worker from the behavior center, an outreach worker from the county board of developmental disabilities, an outreach worker from the autism center… and a partridge in a pear tree.  It takes a village, right?  However….. we HATEEEEEEEEEEEEE our required weekly behavior therapy.  All three psychiatrists we’ve tried thus far have required weekly therapy.  The ONLY weekly therapy covered by the twins’ insurance within a half hour of our home is at a behavior center that we’ve grown to dislike VERY much.  And we’re there at LEAST once a week.  We have the outreach worker there, the therapist there, and the psychiatrist there.  Soooooooo at my last meeting with the outreach worker from the autism center, I told her how we’re STUCK at the behavior center which shall remain nameless.  She called a developmental pediatrician to ask her if she’d consider doing our med management (and not require this weekly therapy…..).  We have our first meeting with her on the twenty first.  I HOPE this works out so our Wednesday afternoons could be easier!

1 copy of each for the SSI lawyer.  We tried applying for SSI for one twin and got denied.  I got frustrated and gave up.  But ASIDE from the work I put into my businesses and the work I put into laundry/ bill paying/ cleaning (ok not that much work ha ha)/ cooking…… I put AT LEAST fifteen hours a week into emails, phone calls, paperwork, meetings, and research about these kiddos.  Dammit we need the money.  PAY me for all this damn work.  So we’re re-applying.  With a lawyer.  Wish us luck.

 

What the heck I’m talking about

People are requesting definitions of the alphabet soup, so here goes…

 

IS= Intervention specialist.  Each of my kids has one in their public schools.

ISA= Intervention specialist aide.  Each of my kids has one of these too.  Wilma never puts her poops in the toilet- EVER, so her ISA gets the fun job of taking poopy underpants off an almost 6 year old.  Fred DOES put his poops in the toilet FINALLY but doesn’t yet wipe himself so his ISA wipes his butt.  🙂

MFE/ ETR=  Multi factored evaluation/ Education Team Report.  The MFE is once every 2-3 years.  We just had our second one so the twins could transfer from preschool to “school age”.  It’s MANY MANY observations and pages and signatures.  And an IQ test too.  ETR= the report leading from the MFE which brings us to the qualification for the IEP.

IEP= Individualized Education Program.  My kids don’t go to school without one and the benefit of public school is that their schools are mandated to follow it.  I sit in the meetings crafting it and it includes gross motor, behavioral, toileting, etc etc goals.  For instance this year a goal for Wilma is that she must learn to write her name.  A goal for Fred is that he must take turns with a typically developing peer using a central material (car, windup toy) by asking if the person is ready for the object and waiting for a response and asking for the person to pass the object.  etc etc etc.  Each goal has subgoals and progress reports relating specifically to the goals, etc.  I begged for potty training goals.  The goals aren’t well written, but they’re in there.
HFA/LFA= High Functioning Autism, Low Functioning Autism.  Most consider both my twins to be HFA, but dang if I don’t have an almost 6 year old who’s never put a poop in the toilet and another almost 6 year old who refuses to talk to a peer— he’ll either ignore or bite.  But they’re verbal.  And toilet training.  So they’re HFA enough NOT to qualify for SSI or waivers or extra respite funding, but LFA enough not to be able to attend any school they want (I would LOVE to put them in a Jewish day school, but we’re just not ready).

SSI= Supplemental Security Income.  We applied and got denied.  At some point I’ll hire a lawyer and try again, but I’m a bit busy TRYING to make enough money that we can BREATHE.  God forbid we ever want to buy a house or take a vacation— no, I just don’t want to live in a cardboard box!

ABA= Applied Behavior Analysis.  something our kids’ insurance won’t cover and their school district doesn’t feel they need.  But our local autism center demands they get 20 hours a week of it and it’s the most expensive therapy you can find.

There’s plenty more but that’s it for now!

 

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