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

Archive for October, 2012

Medication update

Fred is on 15 mg of abilify.  Without Wilma around, he’s doing ok.  If he were an only child we’d be satisfied.  He still shows lots of signs of autism and plenty of anxiety, but his anxiety is manageable— he freaks out, bites, screams, and it’s over.  His episodes are frequent, but short lived.  Unfortunately he comes home with the daily bite reports and his teacher and IS/ISA still aren’t yet interested in pursuing an FBA and I don’t yet have the balls to demand it.

When he’s with Wilma, all hell breaks loose.
Wilma is now on 1 mg of abilify and 5 mg of focalin.  Today is day 2 of focalin and I don’t know if the focalin is making her SO MUCH WORSE or if she’s just had two realllllllly bad days.  She kicked my husband so hard tonight that we considered the ER.  With ice, he’s limping and no longer yelping in pain, so nothing’s broken.  Focalin is supposed to make her focus, pay attention, help with impulse control…… yeah.  right.

 

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You Should Talk To…..

I get it EVERY day.  “You should talk to _____.  Her son is on a gluten free diet and now he’s toilet trained!”  “You should talk to ___________.  Her daughter goes to (name xyz special school that costs a million dollars here) and is doing great!”.  My favorite was when I was told to talk to _____________  who is a frum mother with a son with autism.  I was told she’s a great resource and knows how to get a lot of help from the board of developmental disabilities.  I knew nothing about her son.  I called her up.  Turns out her son is a teenager— not verbal, not toilet trained, sent by the district to a special school.  So the board of DD gives her daily respite support.  Great.  When your kids are higher functioning (my twins will be 6 in January and are verbal and are toilet trained/training) you cannot get the same amount of support no matter how hard you beg.  The board of developmental disabilities feels they’re too high functioning.  SSI feels they’re too high functioning.  The school district feels they’re too high functioning to be sent out of district “oh, we can handle their needs right here!”  (sure, stick an ISA on them and call it a day.)

I couldn’t possibly write any better than my friend here about this concept—- people telling us they know a kid with autism who……. — please read this, it’s good stuff.

 

More funnies

This happened a couple of weeks ago.  The outreach worker asked Wilma, as she does every week, if she tried to go poop on the potty this week (yeah right). So Wilma says “I couldn’t do it this week— it was Rosh HaShanah and I can’t work on Rosh HaShanah”!

another one…

My rule is that the twins hold my hands in parking lots and I TRY not to have them run ahead. So Wilma asked me to “unhold” her hand. Mommy can you unhold my hand please? Ironically, we were on our way to speech therapy. Yep, and I can unbreak your heart too.

What the heck I’m talking about

People are requesting definitions of the alphabet soup, so here goes…

 

IS= Intervention specialist.  Each of my kids has one in their public schools.

ISA= Intervention specialist aide.  Each of my kids has one of these too.  Wilma never puts her poops in the toilet- EVER, so her ISA gets the fun job of taking poopy underpants off an almost 6 year old.  Fred DOES put his poops in the toilet FINALLY but doesn’t yet wipe himself so his ISA wipes his butt.  🙂

MFE/ ETR=  Multi factored evaluation/ Education Team Report.  The MFE is once every 2-3 years.  We just had our second one so the twins could transfer from preschool to “school age”.  It’s MANY MANY observations and pages and signatures.  And an IQ test too.  ETR= the report leading from the MFE which brings us to the qualification for the IEP.

IEP= Individualized Education Program.  My kids don’t go to school without one and the benefit of public school is that their schools are mandated to follow it.  I sit in the meetings crafting it and it includes gross motor, behavioral, toileting, etc etc goals.  For instance this year a goal for Wilma is that she must learn to write her name.  A goal for Fred is that he must take turns with a typically developing peer using a central material (car, windup toy) by asking if the person is ready for the object and waiting for a response and asking for the person to pass the object.  etc etc etc.  Each goal has subgoals and progress reports relating specifically to the goals, etc.  I begged for potty training goals.  The goals aren’t well written, but they’re in there.
HFA/LFA= High Functioning Autism, Low Functioning Autism.  Most consider both my twins to be HFA, but dang if I don’t have an almost 6 year old who’s never put a poop in the toilet and another almost 6 year old who refuses to talk to a peer— he’ll either ignore or bite.  But they’re verbal.  And toilet training.  So they’re HFA enough NOT to qualify for SSI or waivers or extra respite funding, but LFA enough not to be able to attend any school they want (I would LOVE to put them in a Jewish day school, but we’re just not ready).

SSI= Supplemental Security Income.  We applied and got denied.  At some point I’ll hire a lawyer and try again, but I’m a bit busy TRYING to make enough money that we can BREATHE.  God forbid we ever want to buy a house or take a vacation— no, I just don’t want to live in a cardboard box!

ABA= Applied Behavior Analysis.  something our kids’ insurance won’t cover and their school district doesn’t feel they need.  But our local autism center demands they get 20 hours a week of it and it’s the most expensive therapy you can find.

There’s plenty more but that’s it for now!

 

Such a bad mommy blogger…..

It’s been far too long.  But I’ve been launching a new business website, and now I have three businesses which are all vying for my attention.  My main business, plus my two side businesses, one of which I did some extra training and moved up a level last week.   I’d LOVE to be the special needs mommy who does laundry, cooks, bakes, pays bills, and organizes while the kids are in school, but even with full day kindergarten my days are still frantic and hectic because I need to do all that stuff PLUS tackle all the business stuff.  PLUS email teachers.  EVERY.  Single.  Day.  Other autism mommies, are you getting the DAILY emails?  Doesn’t it get old?  It’s always something…..

Wilma is not allowed to come on field trips without a parent accompanying her.  “We cannot support her behaviors in an open environment”.   So there’s always a field trip (#2 is coming up next Wednesday and it’s only early October) and if I don’t come, she’ll give me hell because she won’t be allowed to go.  So erev Yom Kippur (for the non Jews, that’s the day before a Jewish holiday— big cooking day)— I was at the zoo all day.  Next Wednesday, it’s the fruit farm.  Is it legal for them to require a parent just because she’s special needs?  Probably not.  I don’t want to fight it.

Fred is biting every day.  On days he doesn’t bite, he hits and/or kicks.  I get the notes home always with the smiley faces noting that the other kids are accepting of it and encouraging of him “use your words!  Calm down!”.  I’ve nicely requested an FBA twice.  They want to wait until they see CONSISTENT biting (read:  a week without a Jewish holiday where the kid is THERE every day).  Fine.  I’m not fighting it yet…. but after the chagim (Jewish holidays), I might just call a conference.  They plan to beef up the ISA’s presence with Fred (kind of like assigning him a one on one aide which is what the FBA would probably lead to anyway)— but will Mr X’s presence pinpoint the source of the biting, or just be a response block?  I don’t want to fight it.

Fred is now on 15 mg of abilify per day.  Yes, FIFTEEN.

The gifted program at Fred’s school did extensive testing on him and want to grade accelerate him.  HELL to the no.  You’re going to put a kindergartener who is BARELY potty trained, can’t make friends, can’t share, can’t take turns, can’t be patient, can’t take no for an answer…. into first grade?  So they’re going to speak to Fred’s teacher and IS and figure out a plan to get him some gifted work to do while remaining WITH his peers and learning what he needs to learn in kindergarten.  Sure, he can do fifth grade math now, but if you ask him to wait in line he screams and bites.  They told me they’d never had a kid in the school be so academically advanced while so emotionally/behaviorally deficient.  Thanks, gang, good to know.

Between the center for autism follow up appointments, the center for autism outreach appointments, the old psychiatrists and the new psychiatrist, the neurologists, the weekly therapy appointments, the weekly outreach appointments, the speech therapy, and now I’m being told my kids can’t possibly exist without a weight loss program (for Wilma) and occupational therapy outside of school hours…… I’m beginning to think I need a full time secretary just to schedule my kids’ lives. On the other hand— I think I’ll hire one secretary for that, one to run my businesses, and one assistant to take care of my housework while I go take a nap.

 

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