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

Archive for the ‘IS/ ISA’ Category

Mainstream versus special ed versus one on one aide… ack

Yesterday was the FBA follow up meeting at Wilma’s school. Long story short, I have a child who really cannot handle large group lessons and does well one on one with an adult or in very structured quick change settings (6 minute stations). She just can’t be “mainstreamed” even with an aide. But then again she doesn’t fit into the mold of a kid who does well in a small group special ed class either if the other kids aren’t verbal or social. Behaviors we discussed included flipping lights on and off during lessons, slamming doors, yelling, flopping on the floor and tantrumming…….so yesterday I was now going to discuss with the district the possibility of putting a one on one aide on her NOT to be assigned to her to the mainstream classroom, but to be assigned to HER so if some days she can be in the mainstream classroom for 50% of the day, great, and if other days it’s 80%, great, but she always has the exact same adult super glued to her. As it stands, they have to change her schedule around in terms of adult coverage on her constantly because one aide got put in a diff school and one aide is in charge of K, 1, and 2 kids and the OT has been spending extra time with her, etc.

So.  Today as I was composing the email to the district special ed director, school called.

They asked me to pick her up!  “She’s having a problem”. mmmmm hmmmmmmm. The irony? I was in the middle of beginning to compose an email to the district’s head of special ed requesting a meeting concerning the results of the FBA—- I wanted a one on one aide on her at all times. Well jeepers, this helps my case, don’t it? Along with being asked to attend field trips with her.  So without SO much fanfare, I wheeled in the mega stroller (we have a special needs Maclaren Major for Wilma’s meltdowns), used my superhuman strength to pop her in, had someone else carrying her coat and backpack while I had one hand rolling the stroller and the other hand holding the straps together so she couldn’t adjust them and wiggle out (she tried twice).  It’s just FUN to be the mom rolling the special needs kindergartener down the hallway screaming as all the fourth graders pass by raising their eyebrows, but I digress.

I got her in the car– my biceps are getting bigger.  I got her in the house— go me, I’m supermommy!  I threw away her second dirty pair of underpants of the day (when she’s mid-meltdown they let her sit in her own poop— it’s hard to blame them), wiped her, threw a pull up and jammies on her, engaged the child lock on her door and hoped she’d scream herself into a nap— she was exhausted from the mega tantrum.  No such luck.  So she was upstairs in her room screaming…..

When I got the call.

Her Intervention Specialist.  I had JUST seen her during Wilma’s meltdown, AND I had seen her yesterday at the FBA meeting.  After I took her home, AFTER the FBA meeting and AFTER the mega meltdown which was going to help my case for a one on one aide, she had a discussion with the director of special ed.

Sit down y’all.  REGARDLESS of what’s going on with my daughter, they were planning anyway over the last couple of weeks to begin a small special ed group specifically for behaviorally challenging K-1’s AT her current school.  She’s eligible.  They plan, next month, in March to have four kids from other schools in the district come to this class.  Wilma would be the only kiddo from her current school in this class— the only kid for this class who wouldn’t need to switch schools.  The other kids are all verbal and social, so my worries about having her in a typical MH unit are moot.  She’ll have peers who are like her.  It’s a BEHAVIOR specific class for kids who are too disruptive to be mainstreamed.  One teacher and one aide on five children.  HOOOOOOORAY!  Academically, they’ll work with each kid where they are.  Plenty of specialized attention.  Specials (art, music, gym, etc) that have been so incredibly difficult for Wilma because of the large group activities—— she’ll do with this small group.  Lunch—- small group.  YES!

And that’s not all folks!

The FBA results showed that Wilma is consistently FINE until about 11:00 am.  She falls apart from 11:00 to 3:15.  From 8:45 until 11:00 am her meds are working, she’s fresh and calm, and cooperative.  Because Wilma already HAS a mainstream class at this school, she’ll be the kid in her new class who WILL be mainstreamed—- for PART of the day.  She’ll stay in her current mainstream classroom until 11:00 and then join the new group for the rest of the day.  Both teachers will coordinate what she learns with whom and how.  Her new teacher is well versed in working with behaviorally challenging kiddos.  Additionally, I’m in discussions with the new developmental pediatrician about giving her a second dose of vyvanse around 11:00 am.  It’s working WELL now– until about 11:00.  The first few weeks of Vyvanse we thought it was working well overall, but not anymore— we now see the pattern.  MORNINGS are good.

Well, she’s not going to need a one on one aide!

We’ll muddle through the next few weeks until this class begins and then things should get a lot better with much more consistent coverage for Wilma in the afternoons and a group of kids like her who all need the same type of attention.

Don’t tell Wilma, those of you who know us in real life—- I’ll only tell her when it’s official.

From year to year, month to month and frankly, moment to moment, it’s hard to know whether Wilma is a mainstreamable kid, or a special needs classroom kid.  And that’s okay as long as the school keeps bending over backwards to meet her where she is.

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oh by the way…..

Oh I forgot to tell you all the upshot of Wilma’s IEP meeting and follow up conversations……. she’s not in a special ed class.  She’s no longer REALLY in the mainstream classroom.  She’s not sent off to an autism school.  They’re bending over backwards to create a schedule for her based on her needs.  The resource room and the intervention specialist (who works with first and second graders also) is her home base.  As behavior permits, she is brought into the mainstream classroom with an aide for 50% to 85% of every day.  She gets a LOT of individual attention (some of it from the occupational therapist which is interesting because I had been toying with the idea of begging for more OT…… hey!) and over the past few weeks since this new program has been initiated, her behavior at school has gotten MUCH MUCH better.  She earns the right to go be with the group and see her friends…. and the bulk of her academic work is done in very small groups without the overwhelming atmosphere.  Before she was being removed from the group when she was disruptive.  NOW she works well one on one or in small groups and then GETS to re-enter the classroom for part of each day.  She does all specials (art, gym, music, library, lunch, snack) with her class.  Rest time she does in the resource room because everyone else was resting and she was up at the computer reading over the teacher’s shoulder (poor teacher was constantly emailing me!).

Additionally I won the FBA argument.  I have a meeting on January 10th to sign the paperwork to get an FBA in place for her.  SO WHAT if her behavior has improved over the past few weeks.  LONG TERM, it’s gotten much worse from preschool to kindergarten.  I need a paper trail NOW to show that we’re doing all we can to keep her mainstreamed because things are only going to get harder once the first, second, third grade bullying starts.  Thankfully, there has been NO kindergarten bullying (yet?!).

Here comes winter break.  Two weeks of not being able to travel with them, not being able to take them anywhere by myself, not being able to move a load of laundry without Fred biting Wilma as soon as she ticks him off.  I’ve changed my meds.  I’ve changed Wilma’s meds.  I’m armed with lots of books, toys and games.  Let the fun begin.

Emailing the teachers

I’ve been emailing the teachers.  DAILY.  There’s ALWAYS something.  ALWAYS.  There’s a fine line between trying to get your child what she needs and being a royal pain in the ass.  I’m not hiring a lawyer and getting all fighty with the school, but I’ve crossed the line into pain in the assville.  Am I going too far?  Being too nice?  Being too wishy washy?  Not standing up enough for my kid?  Demanding too much?  I need a crystal ball.

Here’s today’s installment— Wilma’s IEP is a week from today and they don’t want to move her to a special needs classroom and they don’t want to move her out of the school to a special school— but they also don’t want to give her a one on one aide….. something’s gotta give.  Her first report card was almost all N’s (needs improvement).  She spends more time in the resource room than in the classroom.

 

hi there!

Let’s keep her in pullups for one more day if you don’t mind— she’s still “cleaning out” with all the laxatives and doing her business a lot more than normal.  Next week we’ll go back to underpants and hope for the best.  🙂

We need to pick her up on Fridays starting tomorrow— this time of year with the Jewish Sabbath coming in so early, we can’t wait for the bus— it’s just cuts it close timewise.  ______ and I worked it out that I’ll be picking up “Fred” and he’ll be picking up “Wilma”.  So don’t put her on the bus on Fridays until further notice, thanks.

She’s having a really rough time for a good half the day these days— lots of zeros for morning (yesterday) OR afternoon (today) and I understand she’s spending a lot of time in the resource room.  I’m afraid that it’s self-perpetuating……..  she screams or tantrums, she gets to spend one on one time with Mrs M or Miss M, and then she doesn’t want to go back to class.  She craves the one on one attention and though she loves her classmates, she prefers the lower stress environment of one on one work—- I see this at Sunday school, as I’m the twins’ aide since they truly can’t handle a neurotypical program without some help.  I give her lots of one on one attention but I keep it related to what’s happening in class and keep her in the room.  I really feel like she’s needing more of a one on one aide in order for her to be able to get out of kindergarten what I need her to get—– the ability to participate as much as possible WITH her classmates.  I understand she missed lunch with her friends at least once (it may or may not be true but she told me she ate lunch in the resource room?)  and I know she’s missing specials (music at least) sometimes.

I know, of course, that money is always an issue with public school but are you in agreement that she needs more one on one assistance so that she may remain IN the classroom?   I know she gets lots of support with you, Mrs M, and with M across the hall, but since you’re also in charge of 1st and 2nd graders too you’re unable to be with her in the classroom as much as she may need.  Perhaps there are certain points during the day that are most challenging for Wilma and she could have Miss M IN the class with her during those times?  So when she screams, she’s not removed TO Mrs M or Miss M but rather she is being coached IN the room to work through her issues and continue with the group?  I HATE to see her skipping specials, or recess, or lunch WITH the group.

We’ll talk more at the IEP, but I just wanted to put that out there.  Fred also has an intervention specialist and intervention specialist aide at his school, but they are IN the classroom with him because they are ONLY assigned to kindergarteners in that classroom and I know that makes a difference for him.  Instead of needing to go to help and be removed from the situation, help is right there.

I think you’re all wonderful and doing a great job, and doing what you can, but I just wonder if there’s a way we can be doing it differently?   I’d love some clarification at the IEP as to when Mrs M or Miss M are working WITH Wilma in the classroom as opposed to Wilma being removed to the resource room.

Thanks so much.

I know I can be a pain (thanks for putting up with me!!)   but if we can’t move her to a special needs classroom and we can’t move her out of the school to an autism school, we need a way for her report card not to have mostly N’s on it and for her to be in the room 99.999% of the time WITH the group.

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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