Public School Goodies Coming to a Behavioral Charter School?

After a zillion really terrible IEP meetings as my son was getting kicked out of public school a couple of years ago, I’ve been content with his new school— not THRILLED mind you, but content. A lot less aggression as he has very few students in his class and there are maybe 40 students in the whole school with an amazing student:staff ratio. Everyone is trained in TCI, everyone knows what to do in case of meltdown, and there are plans for dealing with aggression stemming from autism. But I’ve had two problems with this school— the lack of gifted services, and the gym curriculum or lack thereof. As far as the latter goes, there is NO adapted phys ed and therefore there are no gross motor skills on the IEPs for this school’s students. It doesn’t matter that he’s always had gross motor goals and adapted phys ed at his previous school. Furthermore, gym class is simply run by the intervention specialists— they do kickball, dodgeball, defend the castle and that’s about it—- VERY different from the diverse phys ed curriculum of public school. I asked about how we can get one of the public school adapted phys ed teachers down to his school if not to see him once a week and get gross motor goals on the IEP, then at least evaluate him and tell me how to focus his gross motor for the next while because I’m no phys ed teacher and there is very little this boy needs more than gross motor work. Last year I got a lukewarm apology— sorry, that’s not done, no gross motor goals on IEP, oh well. This year…… success! Fred’s first gross motor eval at this school is coming up and it looks like he’ll be able to have one of the adapted phys ed teachers (ironically… his twin sister’s!) come down to his school to work with him! All I had to do was ask nicely two years in a row. More info about the gifted stuff to come— basically they HAD been individualizing his math and science work but they had reason to stop doing that. In my next post I’ll tell you what’s up there.

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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?”

 

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 4^th 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.

Hurry Up and Wait… No More

Now that Wilma’s medications are under control and her behaviors are starting to improve, and many times we can go places and trust that she won’t throw shoes at strangers’ heads, we can finally begin intensive behavioral therapy. After years of insurance won’t cover it and the school district doesn’t provide it, we sat on waiver wait lists. After getting approved for SELF waiver we waited some more. Our enroll date is Jan 29th. FINALLLLLY this coming Tuesday, April 8, we will begin services— part of the FBA that will lead to ABA. Do a dance of joy with me. Will ABA be the magic bullet? Maybe not. But to be able to access it and try it before shrugging it off as “well, she’s high functioning, so it’s probably not for her” is a blessing. Now to get Fred off the wait list. When I called and asked why she was approved first I was told it was because he “ONLY” has autism. ONLY. HAH. She’s got autism, adhd, ODD, megacolon, encopresis….. and a partridge in a pear treeeeee. At the moment, his behaviors are more severe than hers. But SHE’LL get the intensive therapy.

ABA is what I THOUGHT would be part of Fred’s autism classroom in preschool. Though I LOVED that class for him, it wasn’t ABA. Some kids get ABA tutors in public schools— but I’ve been too happy with the district to fight them. For what they DO provide, they do an awesome job and really love and know our kids. ETR/IEP meetings are a breeze. But I’ve been wanting to try ABA and had no way to do so. Until now.

The Crazy World of 2E

It’s official. They finished their 8 million tests and Fred is officially 2E, twice exceptional. He’s identified for now in three categories since they didn’t test for all categories. We are NOT grade accelerating but we ARE subject accelerating, just in math. At this point what that means is that they are moving him from first grade to fourth grade math starting in January. They want to move him for science too if that goes well. It’s not my job at all, of course, but what I’m doing right now during winter break (have I mentioned these monkeys are HOME for two weeks?) is going through each unit of the second, third, and beginning of fourth grade curricula to see what skills he’s missing. Printing out worksheets on those skills, and getting him ready for fourth grade math. If I don’t finish, he’ll struggle— which means he’ll scream and cry and freak out in class. If I do it, he’ll academically be okay, but he’ll still struggle— which means he’ll scream and cry and freak out in class. (The zoloft increase isn’t going well and his anxiety is at an all time HIGH now). So really, nothing I do matters. But it will make me feel better to know that he’s prepared. He can either be bored out of his mind and scream like a banshee during school or he can be academically challenged and still scream like a banshee— so I’m glad we’re doing this— but I’m not certain they’ve ever had another kid in this school subject accelerate so many grades at once. They don’t have a self contained gifted program until fourth grade which means he’ll do fifth grade math in second grade at this school and then we’ll have to decide what to do with him for third grade— I don’t think they’d bus him to the middle school for math and back and I AIN’T homeschooling no MATH, no sirree. I trust the school— they’re GREAT with him. Does he need better meds and better anxiety control? You BET. But academically and socially they’re doing all they can for him as he continues to tumble downwards away from his peers socially and run rings around them academically (particularly with math). This kid is a CHALLENGE. In the same week we did his new IEP and did his gifted scores, we also did a 28 page FBA on his biting behaviors.

Wilma school update

Quick IEP amendment this morning!

Yes, they ARE starting a class for a handful of kids with behavior issues at Wilma’s current school.  I met the teacher today and she’s young and spunky and has already met and fallen in love with Wilma.  Most of the kids are in the room for the full day.

But Wilma doesn’t need to be placed there all day every day.  Her newest med combo is working well enough, for now, that she can stay in gen ed and treat the new class as a resource room.

We swtiched her from Vyvanse to Adderall.  Vyvanse was GREAT in the morning but she metabolized it super quickly and by 11:30 she was a mess again.  On adderall, she’s a lot less aggressive and more cooperative ALL DAY!  So she’s now doing abilify and adderall.

So, she’ll be in her old resource room for morning and afternoon routines, her new resource room for math (yay for small group math—- she’s been mostly doing math individually) and lunch (she needs a small group for lunch!)…. but she’ll be with the large regular class for everything else.  Including (at this point) specials: art, music, gym, library— she’ll have an aide with her there, but if this new routine is going to fall apart, specials is where it will happen, so I’m hoping plan B will be to have Wilma visit specials with the new class.

With fingers crossed, we’ll see how the new setup works out for her!   I’m super impressed that the school is able to personalize this for her so well— instead of JUST saying it’s gen ed with an aide OR it’s a special ed class, they’re creating and re-creating (this is not our first change this year!) a schedule based on her needs.

Today’s meeting was quick and optimistic, as opposed to the FBA meetings we’ve had recently which were a lot more involved and pessimistic.  I’m putting high hopes in adderall that Wilma can stay even keeled for the rest of the school year and we don’t need to make more changes!

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.

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.