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

Archive for the ‘First Grade’ Category

Echolalia is fun

A certain autistic echolalic 7 year old with a photographic memory and a speech impediment said something very strange at school last week….. “Chippendales two bit whore!” soooooo of course I got a call from the teacher. She asked him where it’s from and he said (picture this being said in a very nasal monotone): “Big Nate, I Can’t Take It! page 184” (yes I promise he said the page number!). As she’s on the phone I open the book to page 184. Nate is selling a calendar to an old lady who says “I’ll take the puppies one”. Nate says “or….. Chippendales 2004: Hot N Beefy”! 2004. Not two bit whore. My kid is horribly inappropriate but the speech impediment makes him much much more so. An entire chapter of my upcoming book shall be relegated to things they yell at school that make me look like the world’s worst parent.

Roses Are Red….

Proud echolalia moment: Mr. SortedMegablocks, my wonderful hubby, told the kids that when he was a kid he wrote on a test: “Roses are red, violets are blue, this test stinks and so do you.” So guess what Fred wrote on a test…. in first grade? thank goodness for teachers who understand echolalia and simply put a smiley face….. one of these days one of my kids will do something APPROPRIATE and I’ll just be in shock.


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.

The Crazy World of 2E

It’s official. They finished their 8 million tests and Fred is officially 2E, twice exceptional. He’s identified for now in three categories since they didn’t test for all categories. We are NOT grade accelerating but we ARE subject accelerating, just in math. At this point what that means is that they are moving him from first grade to fourth grade math starting in January. They want to move him for science too if that goes well. It’s not my job at all, of course, but what I’m doing right now during winter break (have I mentioned these monkeys are HOME for two weeks?) is going through each unit of the second, third, and beginning of fourth grade curricula to see what skills he’s missing. Printing out worksheets on those skills, and getting him ready for fourth grade math. If I don’t finish, he’ll struggle— which means he’ll scream and cry and freak out in class. If I do it, he’ll academically be okay, but he’ll still struggle— which means he’ll scream and cry and freak out in class. (The zoloft increase isn’t going well and his anxiety is at an all time HIGH now). So really, nothing I do matters. But it will make me feel better to know that he’s prepared. He can either be bored out of his mind and scream like a banshee during school or he can be academically challenged and still scream like a banshee— so I’m glad we’re doing this— but I’m not certain they’ve ever had another kid in this school subject accelerate so many grades at once. They don’t have a self contained gifted program until fourth grade which means he’ll do fifth grade math in second grade at this school and then we’ll have to decide what to do with him for third grade— I don’t think they’d bus him to the middle school for math and back and I AIN’T homeschooling no MATH, no sirree. I trust the school— they’re GREAT with him. Does he need better meds and better anxiety control? You BET. But academically and socially they’re doing all they can for him as he continues to tumble downwards away from his peers socially and run rings around them academically (particularly with math). This kid is a CHALLENGE. In the same week we did his new IEP and did his gifted scores, we also did a 28 page FBA on his biting behaviors.

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!

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