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

Archive for November, 2011

What We All Wish We Could Say

I LOVE THIS POST from Marianne Russo.  Enjoy!

It’s Lonely Up On My Soapbox

I have a VERY unpopular stance on a very sticky issue and I need to vent.  It’s my blog and I’ll vent if I want to.

We have two children.  Putting aside the fact that we can’t handle more than them at this point because of their special needs, my husband lost his job in 2008 and has been “under-employed” since then with no benefits (no health insurance).  We “make too much” for medicaid or other government help (food stamps, WIC), but don’t make enough to pay for our own health insurance.

So, we’re done having children.  Unless by some change of fate, he gets a job with health insurance, our kids magically get potty trained and their behaviors take a massive turn for the better, and we can come up with $5000 or so for a fetal embryo transfer (we conceived the twins with IVF and will get pregnant next time if there is a next time with FET— we’ve got frosties in embryo “daycare”)—– the shop is closed.

I cannot count on two hands the number of people who have told me that if I quit working, we’ll qualify for medicaid, food stamps, WIC, and other free goodies.  Why can’t I just sit back and let the benefits roll in?  We’ve paid taxes in the past.  We’re having a rough time now, and that’s what government help is for.

I cannot count on two hands the number of friends I have who are ON medicaid, food stamps, and WIC (some on section 8 too) who are continuing to have children.  We’ve closed up shop, and they keep on reproducing.

I have one friend who is on section 8, medicaid, food stamps, and WIC.  Not only does she plan to have more children soon, but she has a cleaning lady, and a cell phone with internet access, and a vacation every summer.  I have none of those things.

I’m jealous on one hand, and incensed on the other.  Jealous because I know that if I felt differently and didn’t care about what I truly believe morality requires of me, that could be us—- doing a LOT better financially than we are now—- no medical bills in collections, $600 or more per month of free food, my life a WHOLE lot less stressful without having to hustle for $$$.  Kids are in preschool for the next two hours?  Great, how much money can I make.  (instead of doing what other moms of special needs kids get to do— take care of cooking and cleaning and bill paying during those rare free times).  Incensed because why on earth is it our right to take the government’s money with no plan for getting OFF the programs?  I have a friend who says “NOBODY in my town can have a family of 5-6 kids without this help, so why shouldn’t we take it?”  Um, how about having ONLY the children you can afford WITHOUT this help?

I’m okay with people taking for a few months while they get back on their feet between jobs.  Or taking because they’ve lost a spouse.  But taking as a way of life?  Why can’t the government just give out free birth control to families on programs?  If you get pregnant, you’re off the programs.  Birth control didn’t work?  Give the baby up for adoption.  I told you my views are unpopular.

The typical Orthodox Jewish view is to keep having children and God will provide.  Most families who believe this who fall on hard times financially collect government benefits.  I wonder what the non Jews think about this.  It’s one of the thinks I think about daily.

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!

Anyone Have A Crystal Ball?

My twins’ school is GREAT.  For neurotypical kids it’s downright perfect and for kids with mild special needs it’s also really a nice program.  We love it, we won’t want to leave…. for what it OFFERS, it’s the best around and the people are so friendly and helpful and wonderful.

However.

It doesn’t offer true ABA— no public school around here does.  It doesn’t offer super intense behavior therapy.  It DOES offer an autism class with a varied approach, but the teacher (Fred is in that class– it’s his teacher) has a VERY laid back approach to potty training.  She feels the students will do it when they’re ready.  Calm down, he’ll be trained by the time he’s 30.  A very valid approach and I appreciate her point of view.  However, I want Fred sledgehammered more than that.  I need someone at school to do more than simply sit him on the potty and watch him NOT do anything in it and wet his pullup.  I want ABA to be part of his routine (even if it’s not the end-all be-all of the approach to teaching him).  There are five boys in his class.  As far as I know, none are potty trained, and only two (Fred included) are verbal.  What I would LOVE is a class in which there are potty trained kids for him to emulate, verbal kids for him to emulate, AND a more ABA – based approach.  MOST private ABA – based programs around here are out of reach financially.  But this week I found one that would be free.  EXCEPT— we’d be giving up public school completely and enrolling him solely in the ABA-based program which means we’d be taking a $20,000 scholarship and getting nothing for free from the district.  It’s a tough decision.  I’ll be seriously looking at the program next week.  The scholarship ($20,000) would completely pay for the program and he’d get his OT and ST as part of the program as well as ABA.  I don’t CARE if he can hold scissors or a pencil correctly (his OT at public school does)—- *I* care that he starts to have life skills necessary to (eventually) mainstream back into a neurotypical classroom.  *I* want OT to be working on pulling down pants, buttoning and unbuttoning pants buttons, VOIDING in the toilet rather than just sitting there (a TOUGH one, but one that CAN and SHOULD be done in school!).  Above all, I want potty training goals in his IEP.  The school doesn’t want to put them in there.  I’ve been told to push and fight the school.  I hate being THAT kind of parent.   Meeting with the current school on November 14th to start talking about IEP goals and options for next year.

As far as Wilma goes, I’m BASICALLY happy with her placement— she does okay in a mixed class of half neurotypical kids and half special ed kids.  BUT— I don’t know which kindergartens in our district offer that mix or IF any do.  If she’s not toilet trained by kindergarten, will she need to go into a self contained class?  If so, I may as well pull HER out and put HER in the ABA program too.  At any rate, if I do pull him, I’ll probably pull her too—- their separate schedules this year are already driving me batty and it’s only November.  If they both go to the ABA based school, they’ll BOTH be there from 9:30 to 2:30.  (I sense a workout, a manicure, a nap, some scrapbooking, and oh yeah— SOME *WORK* time in my future if I decide to go this route…..).  Does she NEED ABA?  In my opinion, not even half as much as her brother.  BUT— the center for autism has in writing that she needs it, so she’ll certainly get into the program… if she were my only child I don’t think I’d be concerned right now.  But I would still be fighting for potty training goals in her IEP too.  She’s potty conditioned now for certain.  *I* put her on the potty once an hour.  She pees.  If *I* don’t put her on in time, she simply wets herself.  Pullup, underpants, whatever— she doesn’t care— in fact, she thinks it’s funny.  “look mommy, I wet myself, ha ha ha”.  Consequences don’t matter.  Bribes don’t matter.  Trying to get more independence from her, but at least I can keep her dry at home (no success at school yet).  NO success with #2 yet.   But still, she’s light years ahead of her brother who sits on the potty saying ‘I will NOT make in the potty”!

Private ABA- based school?  Public school?  TOUGH decision.  If my kids were neurotypical, they’d be in a private Orthodox Jewish day school.   Where we live that isn’t an option for kids on the spectrum unless they’re toilet trained and can be mainstreamed with an aide.  (Years from now, maybe.  for now?  nope).

What’s right for my kids?  When I thought all ABA based programs were financially out of reach it was an easy decision.  Now that I have more knowledge it’s a tougher one.  Wish me luck!

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