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

Archive for the ‘Kindergarten’ Category

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!

Advertisements

Poop. Part 3.

my faith in Wilma’s new GI doc is restored. After a horrific weekend, the bad news is that she has to have another xray and an enema before she gets a monometry. The xray is to see where everything is— top?  Bottom?  Are these 8 zillion poops coming AROUND a blockage?  The exam Friday didn’t indicate a blockage but before a monometry we have to make sure.  the monometry is to measure the pressure in the anus.  Hopefully that will give us some answers.  My guess is that there’s a nerve ending problem or a pressure problem, but not Hirschsprungs.

But the GREAT news is that she’s not (yet) getting a biopsy and she’s now OFF two of the three new meds— one of the meds caused SUCH horrificness this weekend.

She’ll probably still get sent home from school tomorrow (though I plan to try to send her, with a nice email to her teachers about what’s going on)—I mean how many times do kindergarten teachers want to change a 6 year old?  They usually do it once or twice a day— but four to five to ten times?  nah, they’ll call me.   But we’re on the road to normalcy and some sort of diagnosis. Hooooooray!

Meanwhile it’s such a pain to write down every time she poops and try to find the piece of paper.  I’m now using a nifty little program where I can enter in poops for both kids.  And meds.  And therapy appointments.  And doctor calls.  And med changes.  All the stuff that’s on a million pieces of paper all over my office.  This free program is online– check it out!  http://birdhousehq.com/

POOP Part two.

Once upon a time, Wilma had never pooped in a toilet.  She had one poop a day in her pullup— usually at nighttime after I put her to bed in her nighttime pullup.  Life was calm.  As calm as life could be with two autistic five year olds.

Wilma turned six and her school nurse suggested I take her to a GI doc to rule out physical problems.  Was her encopresis PHYSICAL?  EMOTIONAL?  IMMATURITY?  Who knew?  So I figured the GI doc would find nothing wrong and life would go back to the usual.  She just wasn’t ready to toilet train.  okidokee.

GI doc did an xray.  Despite Wilma pooping at least once a day (nice normal sized ones), she was backed up to her eyeballs.  I agreed to a cleanout.  She pooped like CRAZYYYYYYYYYYYY for a weekend but then on the maintenance meds she was at three to four poops a day.  ok, that was do-able.  Until it was five to six poops a day.  Then up to ten poops a day.  On the maintenance dosages.

So we went back to the GI doc Friday.  He wanted us to do cleanouts EVERY weekend for the next three months.  He wants to re-train the neurofibers in her anus or some ridiculous sounding bunk like that.  He did not suggest a rectal biopsy to rule out Hirschsprungs or a scope.  He simply wants to INCREASE the meds.  I was in shock, but agreed.  Oh Lordy Lordy.  Friday night I gave her his recommended dosages.  Saturday she pooped 14 times.  That’s 14 pullups, people, at 70 cents per pullup.  Today, Sunday, she pooped another 14 times.  Might have been 15.  I lost count.  Her body cannot be enjoying this.  I am going CRAZY.  He’s got to give me money for all these pullups, some respite care, and dammit, I want HIM to change her for a day and see if he still thinks this is the route to take!

He increased the maintenance meds too.  hah.  After 30 poops in 48 hours, my husband and I agreed– NO MEDS TONIGHT.  As it is, even with no meds tonight we have no chance in heck of her being able to leave the house tomorrow– trust us– there will be another 8-12 tomorrow!  It’s president’s day so no school, but we’ll just sit at home playing games, coloring, reading, and changing pullups.

I’ll call the doc— NO WAY am I putting her through this anymore.  He needs to jump straight to a rectal biopsy or a scope, OR I need to stop going down this road and forget about toilet training her for another year or two.

It’s heartbreaking to have a fully verbal, cognitively aware, “HIGH FUNCTIONING” six year old NEVER defecate in a toilet, but I think it’s even more heartbreaking to allow poop to rule our lives in the name of “maybe this will teach her anal neurofibers”.

Hirschsprungs?  EE?  If this is a physical problem, what’s your diagnosis, fellow moms?  At this point it’s pretty obviously a physical problem.  Despite her severe adhd and her autism, she can speak paragraphs about where poop is supposed to go and she IS able to put her urine there.  She cheers her brother on through his poops and flushes for him.  She watches me poop.  She totally gets it.  I don’t think she’s cognitively perfect, but THIS—- SHE GETS IT.  But her body doesn’t.  I can’t believe it’s just her hypotonia either.  I don’t know anyone with hypotonia like THIS.

SO SICK of wiping her butt.

And for all of you wondering—- if she’s so high functioning, why not just put her in a Jewish day school with a one on one aide—— here’s your answer.  How many day schools are obligated to change a six year old?  Public school HAS to take her.

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.

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.

Tag Cloud