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

Archive for the ‘SELF waiver’ 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?”

 

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.

Twins Are Ready To Go To Shul…. But How?

I just posted this in a facebook group for Orthodox Jewish moms of “special” children. I’d love the opinions of the fellow Jews reading this….. how would you handle shul if you were me?

opinions please! My twins turn 7 tomorrow (!) and are very high functioning except for severe behaviors— fully verbal and cognitively fine— both have autism. One twin will start receiving the Ohio SELF waiver in February— we’ll be using much of it for therapy insurance won’t cover and some to pay for a DECENT summer day camp (the only special needs camp we’ve been able to afford has gotten much suckier— a JEWISH special needs camp would be ideal, but this is Ohio….). But we’ll have more money we can use to have a certified person accompany me and the kids in the community— most places I cannot take both twins by myself because of severe and dangerous behaviors. We haven’t been attending shul at all. My twins’ only exposure to shul has been on Simchas Torah when Abba goes to a hashkama minyan, comes back to get us, and we go do the dancing. We’re safe at shul with one adult for each twin. So being that my kids are very cognitively aware and are learning davening and do have many many moments each day which are 100% FINE, but being that if I were to take them both to shul by myself, as soon as one twin breaks down I’d need to take them both home and that’s physically impossible to do due to the unpredictability of severe behaviors (when I walk with them both during a double meltdown, strangers get bitten or get shoes thrown at them)—— I’d like to take someone to shul with me. I don’t want my husband to need to leave shul or be disturbed at all. As soon as I hear my son melt down on the men’s side I need my husband to be able to walk him outside and have me or my helper meet him and take him home. If my daughter melts down I need to have my helper or myself take her home. If I can do this, we can finally enjoy shul as a family, I believe. We’d do 20 minutes, then 40….. I wouldn’t force 3 hours on 7 year olds— but severe behaviors could happen 10 minutes in with one twin or both and I physically can’t take them both there or home. So here’s my question——- do I hire a Jew or a non Jew? A non Jew isn’t allowed into an Orthodox shul. A Jew would need to drive on Shabbos to get to us. An Orthodox Jew wouldn’t be certified to be able to be paid by this waiver to help us— we have to choose from a list of people…… do I ask the Rav for a heter to bring a non Jewish worker into shul? Do I ask for a heter to hire a Jew even though that means the Jew would drive? It’s a strange conundrum. For the rest of the week I can hire whomever but how do I handle Shabbos and Yom Tov knowing that’s when I need help the very most? (the last time I took them both for a walk by myself we were all stuck crying for half an hour until someone went into shul to get my husband who did not enjoy having his davening interrupted to help get them safely home). **OR** do I hire a non Jew to stay with one twin at home while I take the other twin to shul and just switch twins each week? And if I go that route, what are the rules of hiring a non Jew to work on Shabbos and Yom Tov? I know other people in this group have non Jewish helpers on Shabbos but I haven’t seen anyone yet have this shul conundrum……. thoughts?

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.

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