Musings from an Orthodox Jewish mom of twins with Autism Spectrum Disorders, ADHD, and one twin has encopresis, megacolon, and a cecostomy. I'm tired. :)

Archive for October, 2013

Can I just hire someone to finish toilet training?

The twins are almost seven. I want to be done with toilet training sometime in this century.

Fred does 100% great AS LONG AS I *tell* him to go pee every hour and a half to two hours. If I keep my mouth shut he happily wets himself and doesn’t even say a word until I notice or until the next time I tell him to go pee. If I ask him why…. guess what his extremely brilliant response is? “I don’t know”. For poop, he poops about once a day in the toilet after the dance. I notice the dance, I TELL him to go poop. At school THEY notice the dance and THEY tell him to go poop. If a day goes by with no dance and no poop, I sit him on the toilet 2-3 times before bed and if nothing happens, take a wild guess what happens AFTER I put him in his nighttime pullup and go downstairs? He is considered toilet trained— so darn it, I want HIM to take responsibility sometime in this century for his own bodily functions— I want him to understand what it feels like to have the need to urinate or defecate and transmit that feeling to his brain and have his brain tell him to ACT upon it. Any ideas, folks? Otherwise, right before he walks down the aisle at his wedding I’ll be TELLING him to go potty.

Wilma has the same pee problem— she needs to be told—- but every now and then she DOES initiate for pee— it’s so wonderful to hear the words “I have to go to the bathroom”. Poop? Well. After 4 xrays, a spinal MRI, manometry, metamucil, ex-lax, probiotics, 3 miralax cleanouts, 1 enema cleanout and at least 2 enemas a week, her PHYSICAL megacolon/ encopresis problem is indeed FIXED. There is no way this child is having a physical problem anymore. However, at almost age 7, she still shows NO signs of understanding when she needs to poop— no dance, no nothing. Every night after dinner I tell her to go poop. Most nights she does. Some nights she tries and doesn’t succeed and I give her an enema and that’s the only way we MOSTLY avoid accidents. But some days, like today, I’m taken back to the days of 10-17 poops per day never in the toilet. Today she had a horrible “accident” (hard not to put it in quotes….. does she REALLY SERIOUSLY have NO idea it’s coming??? she’s NEVER initiated a poop in the toilet EVER!)—- I threw away her underpants, put her in a pullup, took away rewards for half an hour (no ipad time or computer time after homework), and she had another “accident”. I’m the one who gets kicked in the face while changing her (like a baby). I’m the one who gets shoes thrown at my head. But I’m not the one who walks in the door and complains about the smell. Anyone who walks into my house and complains about the smell needs to change an almost seven year old who doesn’t want to be changed. This girl will not be allowed to date until she takes responsibility for getting herself to the bathroom for every pee and every poop. In other words, she’ll be single and living with me forever.

SO sick of toileting. I do not have babies—- I DESERVE to be done with potty training.


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!


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.

More funnies

Wilma has now lost 5 teeth. Fred has lost 2. In case you’re curious, he lost his second tooth by biting his teacher. The private speech therapist asked her today about her newest lost tooth. Her answer? “Yeah, there’s a teenager tooth coming in.” lol.

Wilma came home in wet underpants two days in a row. I asked her what happened. “don’t worry mommy, the pee is drying- it’s okay!”

Tag Cloud