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

Archive for the ‘Abilify’ Category

Spring 2014 update

It’s been a while….

Wilma is on 6 mg of abilify and 30 mg of adderall and doing AMAZINGLY both at home and at school. At school, there are virtually NO more episodes of flopping to the ground and screaming her head off. At home, there are entire days with NO episodes of ODD. The adhd has disappeared into adderall oblivion and homework is a breeze. Her major episodes are all ODD related and down to a few times a week rather than a few times a day. She does pick her fingers until they bleed on purpose and get blood all over herself on purpose (she even puts it on the doorposts right before Passover— irony!), but that’s SMALL potatoes compared to the days of rolling her in a stroller screaming out of the library, being kicked out of Chuckee Cheese, etc. I’m still terrified to take them most places by myself but that’s from remembering history more than today’s reality… I think. But I don’t want to put a mahooey on it. AND—- a majority of her poops land in the toilet due to great laxative timing, and a teeny bit of command of her nerve endings! She poops in her underwear but just a little bit— tells me immediately and then I can put her on the toilet and she does the rest– huge improvement! A couple of times I’ve even caught her fidgeting and told her to try to poop— CLEAN underpants and an ENTIRE bowel movement in the toilet!

I credit our county board rep for a lot of the improvement— she’s helping me chart behaviors and target particular times of day and particular triggers. Of the Center for Autism’s outreach program, the psychologist, the developmental pediatrician, and the county board rep, she’s probably the most helpful— it’s taken a long time to gather this dream team.

This month’s improvements: Chuckee Cheese got rid of some games and brought in some new ones. She didn’t flop on the ground, scream her head off, and throw her shoes at strangers. She simply…. made friends with a new game. Amazing. We had stopped buying soda for a while. We had some this week—- she wanted some after dinner tonight. I asked her to wait until she was finished with her chicken. NO plates went flying. No forks went flying. Seriously, it looked like a typical dinner with typical children. There are entire days with no behaviors worth writing down. There have been days with 83 to 120 minutes worth of severe behaviors. But lately—- 20 minutes over the course of a day is typical for us (on a weekday when they’re mostly at school anyway, but STILL!)

Fred is on 10 mg of abilify and OFF the zoloft and doing better at home. He’s doing better at home simply because WILMA is doing better at home. At home, I don’t give him a lot of expectations. He’s had a long day at school. As long as he does his homework and goes to his after school activities, I pretty much let him have at least a half hour of ipad or computer time a day and that keeps him fairly calm until Wilma starts up. At school, however, things have gotten significantly worse. It all started during the zoloft trial period, but it’s continued and through putting together the FBA and changing up his behavior plan at school and bringing in the county board rep to observe him at school, I’m starting to wonder whether to ask for a placement change (self contained class), a one on one aide, or a different (read– expensive autism based) placement. I LOVE this district and don’t want to come in with a lawyer and beg for what costs money….. they’re trying so hard and they love him so much. But he’s biting, kicking, and hitting. He’s spending a chunk of each day screaming. The county board rep arrives to observe him and hears his screams from outside the building. It’s heartbreaking. He’s calming down at home, but so overwhelmed at school. Academically he’s fine. Socially and emotionally, he’s having such a much rougher year than last year.

Today, he fell at school first thing in the morning and bled all over his pants. They called me to come take a peek and two teachers and I all agreed that maybe he might need one stitch. So I took him to the hospital. Two episodes of Sesame Street, a green popsicle, and 3 hours later, he’s got 4 stitches. Took him back to school for the last hour of the day, came home and finally ate my breakfast at 3:00 pm after filling his pain med and antibiotic ointment scrips. Fun times.

PS— Wilma’s medicaid waiver was approved on January 29th. It’s now April 1st and we still haven’t been approved to begin services (we want ABA!). Meanwhile her behaviors have improved somewhat—- maybe if they make us wait long enough, she’ll behave appropriately 100% of the time. hah.

First Grade Fun

It’s time for the first grade update.

Home is still hard. REALLY REALLY hard. She ticks him off on purpose by flopping on the ground and refusing to do what I ask (including using the toilet—- yeah I’m such a mean mom asking her to go potty). He screams and goes into multi-bite mode. I send him to the playroom to calm down. He screams from there. She still refuses to comply. And on and on. It used to be about toileting AND dinner AND getting on the phone with the grandparents AND homework but now homework is off the list. For whatever reason, homework is going well for Wilma this year. There is a LOT more homework in first grade (at least a half hour every day) but Wilma is calmy complying with homework time. Woo friggin HOO! Fred is having a REALLY rough time with the repetition of homework and the forced writing (he hates being told to write), and anxiety attacks over coming up with a sentence about a book he read, etc. But at least for Wilma, homework is okay.

Fitting homework in is hard. Lots of after school therapy and appointments, dinner, and I can’t seem to get a handle on helping them both at the same time so I usually help Wilma first and THEN help Fred while Wilma plays on the computer or ipad. On a non appointment/therapy day, this works but on other days I HAVE to help them together and it’s hard.

But school? School is going BEAUTIFULLY this year. We have Wilma’s increased adderall dosage to thank for her success. She is now on 5mg abilify and 30 mg adderall. We have finally found the adderall sweet spot for her and her adhd is under control. WHEW. Her oppositional defiance disorder and autism are definitely NOT under control. And don’t even ask about the encopresis. But the adhd? SO much better. And Fred? Well aside from biting the teacher and doing a lot of screaming and crying, he’s academically doing just fine. Socially? eh. Anxiety wise? eh. But he loves school and they’re working well with him and the other kids are accepting of him. Aside from a lack of ABA, I LOVE both of their schools. I really do. Oh, and aside from a lack of Judaism. At this point I’m getting less hopeful that they’ll someday be in Jewish day schools and more accepting that perhaps our place is in public school.

Monday, the friendship circle girls come after school— that will start this week. Wednesday, they’ll go to an activity club run by the Bikkur Cholim house— that will also start this week. Thursday is speech therapy. So our only non appointment/therapy day will be Tuesdays, but I met with a new therapist today who might be able to work with them on Tuesdays so we’ll see. Meanwhile whenever the SELF waiver comes through and we have ABA funding our entire schedule will have to change in a big way.

First grade is fun. Writing sentences, learning addition and subtraction (well for Wilma anyway. Fred is doing fractions, decimals, and percentages with his teacher— thankfully they’re willing to do that for him because his high anxiety moments include being asked to do math at the level where he’s supposed to be– keep his mind moving, and you keep his anxiety at bay– they’ve learned that.)

Wilma is on abilify and adderall. Fred is cutting down on the abilify and going up on the zoloft (did I mention we took him off focalin and put him on zoloft?)—– doc wants to get him off abilify all together with a huge dose of zoloft— good luck, doc. we’ll see.

Toilet training/ megacolon/ encopresis update to come over the weekend or next week—- I’m just…. BUSY!

Is Summer Over Yet?

In the past few weeks here’s what you’ve missed because I’ve been lazy about blogging:

Wilma had an autistic meltdown on the floor of Chuck E. Cheese, screaming her head off and throwing her shoes at people….. she got kicked out.  “you need to get her out of here— she’s disturbing other patrons”.  thanks.   And no, her brother was NOT reacting calmly—- I response blocked 18 bites– go me.  Hoping hubby doesn’t need the hospital for his leg she kicked—- if he needs a blood blister drained, we don’t have health insurance.

the kids’ new health insurance needed a pre-authorization for Fred’s $800 a month med from which he can’t be dumped—- if we were to take him off, he’d seriously need to be weaned.  Last week they gave us enough pills for free to make it through Tues.  Monday I met face to face with the doc who said she took care of the pre-authorization.  Pharmacy still couldn’t put it through and gave us ONE more pill.  Called the doc again and it got straightened out but I was thinking…..  If Fred has to stop taking the medication that is essentially keeping him out of in-patient… cold turkey…. I’ll be inviting the doctor, a rep from the health insurance, and a rep from the pharmacy to come babysit him while he goes cold turkey off the med while I go vacation in Aruba.  If he does go in-patient, that might bump us up on the waiting list for funding for real behavior therapy- hmmm.  Can I scream yet?

got the car fixed to the tune of $765.80.  knock sensor, oxygen sensor, throttle position sensor…..  For a 1999 car, I guess it’s not too shabby.  still only 46,000 miles on it.  $80 of it was from rodents chewing the wires—- yet again.  Rodents love going underneath our cars.  The good news is that the other car (brand spankin new) will need nothing for quite some time because there are only 800 miles on that car.  The other good news is that we paid $300  and the other $465.80 in 2 weeks so I have a couple of weeks leeway not to have to bust out all that dough at once.

my one bit of alone time between august 2nd and august 29th— a trip by myself with no kids—- to the lawyer downtown.  He convinced me not to sue anyone.  hooray.  the kids’ insurance company switched to one that has a weird clause in it that a few cases have won in terms of parents being able to get ABA for their kids in severe situations.  So I was meeting with a lawyer who convinced me that waiver would be an easier route to travel because winning those cases is not a clearly defined route and has lots of complications.   There are a few different waivers.  One has a 10 year waiting list…. but another newer waiver, “SELF”, MIGHT be quicker.  So he gave me the number of a person to call who might know how quick.  Meanwhile we’re already on the SELF list.  If SELF rejects us or takes ten years, then we might be able to sue the insurance company.  Woo friggin hoo.   He was surprised we weren’t suing the district but he agreed that we wouldn’t be able to get it through them anyway, and he said I’m one of the few parents he’s met with who is basically HAPPY with the public school district (aside from the lack of behavioral therapy!).  He said we can get the SELF waiver more quickly if there’s an emergency.

Anyhoo, center for autism demands we do ABA.  District says we don’t need it.  Center for Autism sends us to a lawyer.  Lawyer has us call the board of developmental disabilities.  Board of DD is probably going to want me to sue the district.  Excuse me, I’m covered in red tape.

We got a hamster.  Wilma adores him, Fred couldn’t care less.

My Wii broke and is unsalvageable so I might just have to join a gym— otherwise my only workout option is a realllly old and squeaky elliptical machine in the basement.

I spent 20 hours in the past 2 weeks fixing my ipad.

ok, you’re all caught up.  School starts August 29th.  Till then, I’m in survival mode……  camp is long over.

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.

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.

Medication update

Fred is on 15 mg of abilify.  Without Wilma around, he’s doing ok.  If he were an only child we’d be satisfied.  He still shows lots of signs of autism and plenty of anxiety, but his anxiety is manageable— he freaks out, bites, screams, and it’s over.  His episodes are frequent, but short lived.  Unfortunately he comes home with the daily bite reports and his teacher and IS/ISA still aren’t yet interested in pursuing an FBA and I don’t yet have the balls to demand it.

When he’s with Wilma, all hell breaks loose.
Wilma is now on 1 mg of abilify and 5 mg of focalin.  Today is day 2 of focalin and I don’t know if the focalin is making her SO MUCH WORSE or if she’s just had two realllllllly bad days.  She kicked my husband so hard tonight that we considered the ER.  With ice, he’s limping and no longer yelping in pain, so nothing’s broken.  Focalin is supposed to make her focus, pay attention, help with impulse control…… yeah.  right.

 

Such a bad mommy blogger…..

It’s been far too long.  But I’ve been launching a new business website, and now I have three businesses which are all vying for my attention.  My main business, plus my two side businesses, one of which I did some extra training and moved up a level last week.   I’d LOVE to be the special needs mommy who does laundry, cooks, bakes, pays bills, and organizes while the kids are in school, but even with full day kindergarten my days are still frantic and hectic because I need to do all that stuff PLUS tackle all the business stuff.  PLUS email teachers.  EVERY.  Single.  Day.  Other autism mommies, are you getting the DAILY emails?  Doesn’t it get old?  It’s always something…..

Wilma is not allowed to come on field trips without a parent accompanying her.  “We cannot support her behaviors in an open environment”.   So there’s always a field trip (#2 is coming up next Wednesday and it’s only early October) and if I don’t come, she’ll give me hell because she won’t be allowed to go.  So erev Yom Kippur (for the non Jews, that’s the day before a Jewish holiday— big cooking day)— I was at the zoo all day.  Next Wednesday, it’s the fruit farm.  Is it legal for them to require a parent just because she’s special needs?  Probably not.  I don’t want to fight it.

Fred is biting every day.  On days he doesn’t bite, he hits and/or kicks.  I get the notes home always with the smiley faces noting that the other kids are accepting of it and encouraging of him “use your words!  Calm down!”.  I’ve nicely requested an FBA twice.  They want to wait until they see CONSISTENT biting (read:  a week without a Jewish holiday where the kid is THERE every day).  Fine.  I’m not fighting it yet…. but after the chagim (Jewish holidays), I might just call a conference.  They plan to beef up the ISA’s presence with Fred (kind of like assigning him a one on one aide which is what the FBA would probably lead to anyway)— but will Mr X’s presence pinpoint the source of the biting, or just be a response block?  I don’t want to fight it.

Fred is now on 15 mg of abilify per day.  Yes, FIFTEEN.

The gifted program at Fred’s school did extensive testing on him and want to grade accelerate him.  HELL to the no.  You’re going to put a kindergartener who is BARELY potty trained, can’t make friends, can’t share, can’t take turns, can’t be patient, can’t take no for an answer…. into first grade?  So they’re going to speak to Fred’s teacher and IS and figure out a plan to get him some gifted work to do while remaining WITH his peers and learning what he needs to learn in kindergarten.  Sure, he can do fifth grade math now, but if you ask him to wait in line he screams and bites.  They told me they’d never had a kid in the school be so academically advanced while so emotionally/behaviorally deficient.  Thanks, gang, good to know.

Between the center for autism follow up appointments, the center for autism outreach appointments, the old psychiatrists and the new psychiatrist, the neurologists, the weekly therapy appointments, the weekly outreach appointments, the speech therapy, and now I’m being told my kids can’t possibly exist without a weight loss program (for Wilma) and occupational therapy outside of school hours…… I’m beginning to think I need a full time secretary just to schedule my kids’ lives. On the other hand— I think I’ll hire one secretary for that, one to run my businesses, and one assistant to take care of my housework while I go take a nap.

 

Tag Cloud