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

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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