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

Archive for the ‘ABA’ Category

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?”

 

Is It Possible?

Is it possible that the twins have stayed on the same meds for a while? Fred is on Risperdal and it’s working fairly well!  Wilma is on adderral and geodon (and all the poop meds— enemas, metamucil, colace, probiotics, etc) and….. it’s working fairly well!  Is it possible that Fred has had ONE toilet accident in the past many months (not counting night-time)?  Is it possible that Wilma (only so far through great scheduling and enema timing, etc) only has one accident every few weeks or so?  Is it possible that Fred is down to biting once a month?  Is it possible that Wilma is down to massive tantrumming once a week?  Is it possible that Wilma’s whining and impatience doesn’t bother me so much anymore BECAUSE things are so much easier in general?

And the BIG ONE—- -because the Jewish camps aren’t affordable (as if I could afford two camp tuitions AND two one on one aides) and the special needs camps aren’t affordable (the past four summers we sent them to the ONE affordable special needs camp on this side of town and it got worse and worse each summer—- AND they tripled their price— so now it’s babysitting, not camp— AND too expensive)——– I’m doing CAMP MOMMY and it’s going halfway decently?????

So far we’ve done playgrounds, science center, out to lunch, out to ice cream, spraypark, mall, chuck e cheese… and we built a swingset (they helped me drill!). cooking, baking— Wilma thinks challah dough is a great sensory activity. gonna put up a basketball hoop next week and then we’re getting either a trampoline or a pool (Wilma keeps changing her mind). later in the summer we’re doing piano lessons, and we’re keeping up the limudei kodesh tutoring. We’re down to 3 ABA sessions a week and up to 2 speech therapy sessions a week. Most of my work I’m doing after they’re in bed (and still making decent money, amazingly), but for a few hours a week they come with me to my local sm client and they play with the ipad and read while I work. On the docket still to do…… bowling, library, playground world, and lots of the area playgrounds. We’ve played a few games, read a bunch of books, done some coloring/painting/etc— and so far in the past 15 days have watched ONE dvd— my daughter is NOT good at sitting and watching, lol. TRYING to get them to ride bikes with training wheels, but our gross motor skills are kinda rocky and that’s definitely a non preferred activity (double meltdown fodder). They DO like their scooters though. Here’s a funny—– one twin got a TONNNNNN of summer homework and the other twin got none. So unfair— that’s the icky thing about them being in different schools.

And the zoo. how the HECK did I forget the zoo? and I’m getting braces again so soft food for mommy will be a theme— lol.

I hire help, I utilize my hubby who is off all summer (hello, I’m the only income all summer— you will play with kids when I wanna work, k?) and SOMEHOW, so far so….. GOOD?!?!

BARUCH HASHEM for ABA (6 hours a week for Wilma these days— still waiting priority on the waiver wait list for Fred) and the right meds…… and for these monsters getting older and more mature!

Also?  Also?   Wilma can walk a mile with no stroller now!  HA HA HA HA!!!  Every family walk does NOT involve her flopping down and refusing to move!  (as long as SHE picks the route).  Bye bye hypotonia— you don’t rule our lives anymore!  I might sell the fancy expensive special needs stroller soon!

 

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.

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!

APPROVED!

Waiver. What everyone in New York gets but nobody in Ohio gets. We’ve been on the ten year wait list for a while now and I’m not holding my breath for that one anytime soon.

I’d been quiet about our location on this blog, but what the heck. We’re in Ohio.

There’s a new waiver in Ohio that just started in July of last year. It’s mostly for adults, but there are a limited number of children approved (only fifteen in our county so far, or perhaps fewer- that fifteen could include the wait list). It’s the SELF waiver and for children it’s up to $25,000 that can pay for therapies insurance doesn’t cover…….. guess what we’ll use it for— everyone say it together— ABA!

Wilma got approved! Fred is still on the wait list. When I asked why, this is the response I got…. you’ll love this….. “He ONLY has autism”. ONLY. hah. Because Wilma has SO MANY diagnoses including autism, adhd, hypotonia, megacolon, encopresis, oppositional defiance disorder…… she was priority on the list. His behaviors are just as scary as hers, but no matter—- an amazing amount of REAL therapy for her will help the entire family.

Furthermore, I will be paid to be her support broker. To be my child’s advocate, I will be PAID. All I have to do is attend five hours of support broker training and pass the exams. Insane.

This blog deserved some GOOD news.

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.

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