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

Archive for August, 2013

Is Summer Over Yet?

In the past few weeks here’s what you’ve missed because I’ve been lazy about blogging:

Wilma had an autistic meltdown on the floor of Chuck E. Cheese, screaming her head off and throwing her shoes at people….. she got kicked out.  “you need to get her out of here— she’s disturbing other patrons”.  thanks.   And no, her brother was NOT reacting calmly—- I response blocked 18 bites– go me.  Hoping hubby doesn’t need the hospital for his leg she kicked—- if he needs a blood blister drained, we don’t have health insurance.

the kids’ new health insurance needed a pre-authorization for Fred’s $800 a month med from which he can’t be dumped—- if we were to take him off, he’d seriously need to be weaned.  Last week they gave us enough pills for free to make it through Tues.  Monday I met face to face with the doc who said she took care of the pre-authorization.  Pharmacy still couldn’t put it through and gave us ONE more pill.  Called the doc again and it got straightened out but I was thinking…..  If Fred has to stop taking the medication that is essentially keeping him out of in-patient… cold turkey…. I’ll be inviting the doctor, a rep from the health insurance, and a rep from the pharmacy to come babysit him while he goes cold turkey off the med while I go vacation in Aruba.  If he does go in-patient, that might bump us up on the waiting list for funding for real behavior therapy- hmmm.  Can I scream yet?

got the car fixed to the tune of $765.80.  knock sensor, oxygen sensor, throttle position sensor…..  For a 1999 car, I guess it’s not too shabby.  still only 46,000 miles on it.  $80 of it was from rodents chewing the wires—- yet again.  Rodents love going underneath our cars.  The good news is that the other car (brand spankin new) will need nothing for quite some time because there are only 800 miles on that car.  The other good news is that we paid $300  and the other $465.80 in 2 weeks so I have a couple of weeks leeway not to have to bust out all that dough at once.

my one bit of alone time between august 2nd and august 29th— a trip by myself with no kids—- to the lawyer downtown.  He convinced me not to sue anyone.  hooray.  the kids’ insurance company switched to one that has a weird clause in it that a few cases have won in terms of parents being able to get ABA for their kids in severe situations.  So I was meeting with a lawyer who convinced me that waiver would be an easier route to travel because winning those cases is not a clearly defined route and has lots of complications.   There are a few different waivers.  One has a 10 year waiting list…. but another newer waiver, “SELF”, MIGHT be quicker.  So he gave me the number of a person to call who might know how quick.  Meanwhile we’re already on the SELF list.  If SELF rejects us or takes ten years, then we might be able to sue the insurance company.  Woo friggin hoo.   He was surprised we weren’t suing the district but he agreed that we wouldn’t be able to get it through them anyway, and he said I’m one of the few parents he’s met with who is basically HAPPY with the public school district (aside from the lack of behavioral therapy!).  He said we can get the SELF waiver more quickly if there’s an emergency.

Anyhoo, center for autism demands we do ABA.  District says we don’t need it.  Center for Autism sends us to a lawyer.  Lawyer has us call the board of developmental disabilities.  Board of DD is probably going to want me to sue the district.  Excuse me, I’m covered in red tape.

We got a hamster.  Wilma adores him, Fred couldn’t care less.

My Wii broke and is unsalvageable so I might just have to join a gym— otherwise my only workout option is a realllly old and squeaky elliptical machine in the basement.

I spent 20 hours in the past 2 weeks fixing my ipad.

ok, you’re all caught up.  School starts August 29th.  Till then, I’m in survival mode……  camp is long over.

Advertisements

Fred Funnies

Last night at bedtime I reminded Fred that his bed isn’t a trampoline.  (That warning goes unheeded every night).  He looked at me with such innocence and said “my halo is crooked”.

 

On the way to speech therapy I locked Wilma into her carseat, expecting hubby to lock Fred in since he was on that side of the car.  He didn’t and simply got into the driver’s seat.  Fred said “you may NOT leave a child in a carseat unbuckled.  It’s the 11th commandment!”  (eventually my kids will have the motor planning skills to connect their own 5 point harnesses but at almost age 7 I’m more worried about them dressing themselves someday.  lol.  So if y’all were wondering what the 11th commandment is….

Put a Bow On It

Wilma gets some of her poops in the toilet now—- because we have scheduled sits—- we still don’t think she has any feeling of it coming.  The muscles work, the nerve endings don’t.   So being the awesome enco mom I am, I check the size and shape of the poop each time before she flushes so we can give enemas appropriately.  Tonight I said “oooh that’s a pretty one” and she said “mommy, it’s not even wearing lip gloss or wearing a pink bow!”  HAH!  most moms have to learn the multiplication charts to help their kids with homework.  I have to learn the Bristol poop chart to learn how many enemas a week to give.  Looking forward to xray number 5 to see if the colon is shrinking enough that the rectum can regain feeling within the next year.  fun times!

Tag Cloud