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

Archive for the ‘Vyvanse’ 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!

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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.

 

Mommy can’t get sick

Last week I had my fourth episode of a chronic health problem I’ve had since 2001.  The episodes can last from one to four weeks and scare the bejeepers out of me because losing complete control of how my body feels is terrifying at ANY time… but the last two episodes have happened while I’ve been a mother.  Nightmares about being admitted to the hospital for medication management and further testing have been the bright spot of this past week.  Thankfully, I was scheduled to have a doctor appointment yesterday before Shabbos for another health issue (super high blood pressure—- I’ve already BEEN on blood pressure meds for years now) so I simply came in showing all the classic symptoms (of the chronic health problem that I’m not sure I wish to share here) and begged for help.  With a few tweaks of my medications (I’m now on four meds), I felt normal last night for the first time in WEEKS.  I am SUPER lucky that the med change worked and that I’m now on the upswing.  The silver lining is that I lost some weight (from a lot of vomiting and no appetite), and that my pharmacist, when I explained what I had been going through, gave me a major discount on meds (no, of course we don’t have health insurance) and a big hug.

Stress doesn’t help my health at all, and to be perfectly honest, these kids are the light of my life— and a cause of a SUPER amount of stress.  I spend more time filling out paperwork/calling/meeting with people from the board of developmental disabilities, our local autism center, our local behavioral center, IEP meetings….. than I do with my income producing WORK.  I gave SERIOUS thought this week to giving up on one or the other.  If I give up on all the stuff I’m doing for the kids— I cancel the outreach from the board of dd…. I cancel the outreach, psych, and therapy from the behavior center…. I cancel the outreach from the autism center…….. and I just simply let public school do with them what they do and not run to therapies every day after school…… I’ll have more time to work.  OR…. if I stop working completely and just focus on being a stay at home mom….. well that’s out of the question because my husband makes about a third of what we need to make just to be middle class— he loves his job, but is horrifically underpaid.  There are no easy answers but I’ll just keep muddling along doing what I can and always knowing it’s not good enough.

Meanwhile we had a med change for Wilma this week.  AGAIN.  She is now on Vyvanse instead of Focalin.  And the abilify has been upped again.  By golly, we might be starting to see changes!  Then again she had a half hour meltdown today after cheating at Chutes and Ladders (who CHEATS at Chutes and Ladders?  I calmly said she needed to move to where she was supposed to or I’d put the game away—- so I started to put the game away and well….. my husband didn’t get his Shabbos nap).  But this was the ONLY meltdown in the past 3 days.  SERIOUSLY!  PRAYING that med changes for Wilma and myself are helping us turn a corner.

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