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

Archive for the ‘Preschool’ Category

Kindergarten Placement? Still No Answer

My mom friends of neurotypical kids have all chosen their kids’ schools for next year.  My mom friends of MOST special needs kids have all had their kids placed for next year, whether in a Jewish school with a one on one aide, or in an appropriate public school class.

Our school district has autism units, multi-handicapped rooms, mainstream classrooms, and not much else.  For preschool, Wilma was in an integrated program with half neurotypical kids and half special needs kids.  That’s truly where she should remain for kindergarten.  From what I’m gathering, there hasn’t been a program like that for kindergarteners.  Special needs kids were either mainstreamable, or put in an autism unit or MH class.  So they’ve been thinking about and talking about starting a program like that for kindergarteners.  But it depends on money.  And enrollment.  And the price of tea in China.  Meanwhile, it’s mid May and though my twins have finished the ETR process, there has been no transition meeting yet and no placement.  I got an email today in response to my (rather pushy) email saying that they’re still deciding, nothing is certain yet.  It’s mid May.

Fred was in all three programs during the course of preschool— an MH class, then an integrated class (where he proceeded to bite EVERY student in the room over the course of the year, then an autism unit.  If he’s placed in an autism unit, he’ll be one of the higher functioning kids— he’s verbal and toilet training.  If he’s placed in an integrated class, he’s going to need a lot of extra assistance to make sure the structure of the class doesn’t completely overwhelm him (more than a few kids in the room and he turns into the tazmanian devil when his personal space is threatened).  I’m okay with them putting him in an integrated class to try it out.  Problem is that *IF* they do create this new integrated kindergarten in our district, it may just be ONE class, forcing Fred and Wilma to be in the same room.  That’s a WHOLEEEE other blog post.  However, I’m willing to try.  I just want to KNOW already.  Where are you putting my kids.  WHO will their teachers be.  What school?  What hours?  I want to know for certain that next year I won’t be meeting the school bus outside four times a day and that both kids will be in the same school for the same hours if at all possible.  I’ve paid my dues and deserve that so much.

I’ve thought about giving up on public school altogether and having them attend the Jewish day school with one on one aides but quite frankly, neither twin is ready for that.  Neither twin is ready to be THE special needs outcast in a class of neurotypical kids, with all the comments and stares that entails.  Ultimately, that IS my goal, but we’re just not there yet.  They still need the extra support of having lots of kids like them in their space.  My kids have a lot more in common with non Jewish kids with autism than they do with neurotypical Jewish kids.   Plus, with toilet training still at stake, I’m not sure most one on one aides will want to be dealing with constant potty accidents.  Public school HAS to.  Public school is mandated by the IEP and if they say my kids are high functioning enough to be kept within district and not sent out to special autism schools than by golly, they need to meet their needs.  Public school has OT, PT, and speech therapy right on site.  Public school has a sensory room, special educators, and a staff used to dealing with all types of special needs.

So for a while longer I sit patiently and when friends ask me where my kids are going in the fall I admit that I have NO idea.

The update:  BOTH twins are on abilify.  Wilma’s tantrums have decreased in length and frequency but are still mighty intense.  She no longer throws plates/cups/silverware at dinner.  She is willing to leave the house in the mornings without her brother.  When I ask her to do something she sometimes complies.  HUGE improvement.  For #1, she stays dry as long as I tell her when to go potty.  If I keep my mouth shut, she wets herself happily.  For #2, she is still 100% untrained and it always lands in the underpants.  I buy lots of extra underpants and hey– she never does #2 at school.  Fred’s abilify dose needs to be tweaked still— it tends to wear off before dinnertime so dinner is a challenge with him– it’s as if he’s DONE being asked to comply.  We ask him to eat, he turns on the tears—  how dare we require anything of him at the ungodly hour of 6:00 pm.  Instead of biting, he’s now licking.  He has no stranger anxiety anymore— at the playground he picks random mothers, climbs into their laps, and licks them on the lips.  That’s when I whisper that my kid has autism, and I see how understanding people can be.

The biggest update:  I am now able to take both twins to certain playgrounds by myself.  No huge double meltdowns at certain playgrounds anymore now that we’re on abilify.  We have a standing playdate every Monday morning with another mom and her autistic three year old and neurotypical four year old.  So far we have a nice budding friendship forming.

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Teaching Independence

LOVING THIS POST from Four Plus an Angel.  I’m starting to think about kindergarten.  This fall.  New teachers.  A new school.  Will their teachers be flexible?  Understanding?  Push them to their potential?

The ease with which my son has learned his times tables (you’re supposed to learn those in second grade— not preschool, right?) is the ease with which my friends’ kids have learned to dress themselves (nope, we’re not even close).  The ease with which my daughter has learned all of her state capitals (GREAT memorization skills!) is the ease with which my friends’ kids have learned to use the toilet.  (sure, my kids are partially trained, but we’re still at least a year away from them self initiating a bathroom visit, undressing, doing their business, re-dressing, washing hands without prompts, and going back to their activity.)

My kids have incredible skills in very specific areas, but their adaptive skills are so incredibly weak I worry daily about their independence.  Taking off shoes?  Putting on shoes?  That’s a kindergarten skill?  Kindergarten is coming this fall—- oy, we’re in trouble.  Fred’s shoes are velcro and EVERYTIME I ask him to take them off by himself he screams, whines, and says “can you HELLLLLPPP ME?”.  We’re at least a year from him being able to put them ON, heaven forbid have shoes with TIES!

It’s been recommended that both twins join a newly forming integrated kindergarten group.  Integrated.  It’s my big wish for them, and my big fear.  I WANT them to have neurotypical models.   On the other hand, I want them to fit in.    This year, Fred has been in an autism unit.  He’s been the most “high functioning” student in the class—- toilet training, verbal, academically advanced.  Next year, all of a sudden, most of his classmates will be developmentally…. on target?  And he’ll be one of if not THE most developmentally delayed in the class.  Unable to share and take turns appropriately.  Unable to toilet himself.  Unable to dress himself— including that crazy kindergarten skill:  SHOES.  This year, Wilma HAS been in an integrated class so I’m less concerned about her.  She already has experience being light years behind her friends in adaptive skills.  I wish she cared!

I Love My Calendar Guy

here’s how you know when your preschooler has been the calendar student for the day: he comes home and announces “it’s Friday March 2, 2012. The weather is cloudy. The book of the day is the Big Red Barn and the song is Head Shoulders.” Thanks hon.

Potty training progress?!?!?!

Unbelievable— I have both twins in underpants 100% of the daytime.  Even out and about.  Even at school.  I’m finally at the “less trash, more laundry” part of potty training!

Wilma’s progress is completely stalled— still no #2 in the potty, and #1 in the potty ONLY when nagged. If I don’t say a word, she happily pees the couch, floor, wherever. So I nag a lot– no self initiation. Throwing away lots of underpants due to poop. REFUSES to use the potty at preschool but is fine with all regular size toilets.

On the other hand— Fred has gone from being the one who wasn’t ready to put ANYTHING in the potty to being the one who not only puts pees n the potty but poops too!   Yeah, that’s right— last Friday out of nowhere he finally started PEEING everytime I sat him on the potty— he was finally sick to death of me sitting him on the potty multiple times a day and calmly cleaning up his pee and poop and telling him I’ll wait patiently for when he and his body are ready to get his business in the potty.   Light bulb child—- 4 days into underpants (THIS time– not like I haven’t put him in underpants multiple times before and given up a week later when it wasn’t working!)— and the light bulb finally turned on.

 

Captain Underpants and the Attack of the Talki...

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AND he’s starting to self initiate! I nag plenty, but when I don’t nag, and he needs to go, he walks over to the potty, pulls down his underpants, and does his business! What every mom wants their 2-3 year old to start learning to do. ok, the twins are 5, but STILL! But he still refuses to use any toilets— only the tiny froggy potty at home or the preschool size toilet at school. I sat him on a toilet at a friends’ house today and he completely refused.

So that’s the news from the house of “yes, we threw away some underpants today, but no more daytime pullups!”

Every poop he puts in the potty, I get some scars– he kicks, he screams, he cries, but he puts his poop in the potty.  Progress.

 

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Two Week Winter Break

I was busy obsessing over thinking about the fact that my kids will have a two week break.  This Friday will be their last day of school until January 10th.  I physically and mentally CANNOT take them by myself most places (we have a system down pat for walmart and target— my kids LOVE CARTS).  The library?  Nope.  Playground?  Nope.  Restaurants?  SOMETIMES but I’d better be prepared for a mini meltdown.  (If you’ve ever seen us at the library or the playground, you’ve seen a MEGA meltdown.  A restaurant is usually a mini meltdown which is the worst meltdown ever for a neurotypical kid— for my kids, it’s a regular day.)  So I CAN take them to restaurants, though I don’t love it.

My husband has to work.  I have to work too, but hey, as long as I can make a full time income after the kiddos go to bed, then my daytime has to be the autism battle zone.  Forget the laundry and the cooking.

SSI denied us so we don’t have play money to get respite.  Respite denied us “extra” funds even though in the board of developmental disabilities paperwork are all the reports from our early childhood intervention specialist stating that taking them places by myself is my biggest problem.  I have ZERO issues taking either kid with me anywhere— yes, there are meltdowns, but no safety issues and nobody except me gets bitten— I use my strategies and I can get out the door without anyone getting hurt.  But put me with both kids and as soon as Wilma decides to flop and refuse to move, Fred turns into a tazmanian devil and bites anyone near him—- I don’t have enough hands to keep Wilma from deciding to run off while I pry Fred off an unsuspecting library patron.  I need both of my hands on both children at that moment.  I’m actually the only person I know who took a rep from the board of developmental disabilities to the playground with me, and Fred’s special ed teacher to the library with me— SO THAT we could come up with strategies SO THAT eventually I can go places without hiring a babysitter for one or both of my children.

Other families during winter break travel or go to museums or special events or parties.  Yeah, we’ll be home.  Want to come over for a play date?

This post sums it up SO nicely— THIS is why you don’t see me and my children out and about so often.

IEPs are done!

We did IEPs on Monday!  I was in and out in two hours for both kids (since I had already had a three hour PRE IEP meeting).  Five goals with subgoals for Wilma, Three goals with subgoals for Fred, enough OT, PT, and speech to satisfy me but not so much that switching them to the therapy center is out of the question (I just love their school so darn much though…..).  I’m satisfied.

Potty training goals for both twins.

Kindergarten placement?  To be decided at the end of February when ETR results are back.  ETR testing started this week.  PLEASEEEEEEE  let there be the right program for both of them at ONE school with similar hours this next year.  PLEASE.

But here’s a funny poem because this nice Jewish family loves Xmas poems.  — about the IEP process—- for most fellow autism moms, it will garner some chuckles!

 

Support Groups ROCK

I’m in three, count em, THREE support groups.  Actually more than that if you want to count the facebook groups I’m in.

#1 is an email only group for moms of kids with adhd.

#2 is an every other Tuesday moms group via the local Jewish special needs group.

#3 is a six week Tuesday evening group at the local autism center.  The second session is tomorrow night—- this one costs money but our insurance covers it.  Whammo!

Just for kicks I’m posting here one of the posts I sent to group #1.  This will give you a glimpse into our lives.  I took out all identifying names.

——-

hi everyone!
 
______, you are so lucky that you were able to do build a bear and mini golf and fun and stuff, etc etc.  My kids can’t handle most of that stuff and anytime we’re invited to ANYTHING we seriously consider whether we’re going to go and how much support we’ll need to be able to go (come late, leave early, bring lovies, bring pecs, is there a quiet hallway to escape to, do we need strollers, etc etc etc).  I blogged about that actually.  https://sortedmegablocks.wordpress.com/2011/10/17/autism-awareness-in-the-jewish-community/
 
So here’s what’s going on in our lives lately—- the center for autism wants both my kids to have ABA.  ABA isn’t offered in public school.  If you want to get an ABA based curriculum at ___________it comes with a pricetag of $70,000 and the autism scholarship only covers $20,000 of it.  So I figured ANYTHING but public school was financially out of reach for us at this point.  But I’ve been doing research.  I blogged about our big kindergarten school decision.  I found a “free” ABA based program.   neither of our twins will be toilet trained by kindergarten, both (one more than the other) need ABA…… 
https://sortedmegablocks.wordpress.com/2011/11/04/anyone-have-a-crystal-ball/

By the way, if you’re new to my blog, Fred is _____ and Wilma is ________— I don’t use our real names on the blog.  🙂
 
As far as ______ and her ADHD——  far above the hypotonia and the pdd-nos, the adhd is now the stumbling block to potty training.  I have her completely potty conditioned—- *I* sit her on the potty once an hour every hour and she pees.  But if she needs to go at another time (she has a lot of juice and I don’t sit her down 15 minutes later), she doesn’t tell me, she doesn’t go, and she simply wets herself— pullup, underpants, whatever— she doesn’t care— not only that, but she thinks it’s funny.  “look mommy, I wet myself!”.  So I calmly clean her up and say next time you’ll put your pee pee in the_______  (and wait for her to say potty) and with a BIG GRIN she says “in my PULLUP!”  or “ON THE FLOOR”!  She thinks she’s so amusing.  Seems to be the adhd.  I don’t know how to get over this hump because bribes, charts, and taking away priveliges for wet pullups aren’t working.  No success at all with #2—- she NEVER puts that in the potty.  And NO success at school—- she refuses to USE the toilet at school— she just SITS on it.  School has prizes ready for her and stuff I sent from home too.  She doesn’t care.  We’ve got laminated social stories complete with pictures of her sitting on the potty— it’s ridiculous.
 
her clonidine has helped her tantrums, certainly, but it’s making her super tired.  She naps 3-4 mornings a week now.  (preschool is afternoons only 12:30 to 3:30)   But that’s better than non stop screaming.  Gotta get her a good psychiatrist– the neurologist doesn’t want to handle med mangement for the adhd AND the pdd-nos and frankly I need someone who can really dig deep into ____’s whole case and maybe change her med completely at this point.  Any recommendations for a psychiatrist for a 4 year old?
 
And then there’s brother bear.  No ADHD, but the autism is getting worse, NOT better.  He *IS* verbal, which is a bracha, but it’s also a curse.  We’ve been denied SSI because he’s “too high functioning”.  We’ve been denied extra respite because he’s “too high functioning”.  I can’t take him and ______ together anywhere by myself except somewhere with a cart where I can contain one of them to keep them apart.  At home, I send him to his room to get him away from _______ (and he’s HAPPY to be there).  But out in public when she whines and he bites her and I’m alone with them trying to pay for groceries,  well, it’s fun times.  I have a lot of trouble walking them both from the car into an office or store— she flops down and refuses to walk if she’s tired or ornery.  If I pick her up, he gets upset and bites me.  So you’ll see me in a parking lot holding both their hands just standing there while he’s screaming and trying to bite me and she’s flopped down not moving and I’m (patiently) waiting for her to get up.  Some days I feel like toilet training is the least of our issues but I know that toilet training is the benchmark which will eventually enable one or both kids to mainstream.  But they’re about to turn 5 so I’ll have two 5 year olds who aren’t toilet trained and can’t dress themselves and have massive problems with self regulation.  And I can’t get government programs or SSI, so everyone thinks I can raise them with only part time preschool WHILE making a full time income because chas v’shalom there be a job out there for my husband with enough money to support a family.  Good luck to me—- I’m working at MIDNIGHT via internet— it’s insane.
 
I’m feeling very STUCK between the worlds of neurotypical and special needs.  If my kids were neurotypical they’d be toilet trained, they’d be at __________, I’d be able to work a decent number of hours, and things would be calmer.  If they were special needs ENOUGH, the district would pay to send them to ______ or another ABA based program, they’d be in a very intense enviornment all day, we’d be getting SSI and a decent amount of respite funds, and things would be calmer.  As it is, they’re too special needs for a neurotypical environment, and not quite special needs enough to get the help we truly need.   I think this feeling is common for moms of adhd kids, but in my case I’ve got the ASD stuff too and I still feel it.  Just thought I’d throw that out there– anyone feeling what I mean?  Most of your kids ARE neurotypical ENOUGH to be at a Jewish day school, but I know some of you are feeling like they don’t fit in there— but certainly they wouldn’t fit in in a special ed program either……  it’s tough!
 
Sorry for the novel…….  I have a LOT of thoughts lately!

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