off-label use of prescriptives

I've joined a new group on FB for parents and care-providers for children w/ autism.  One of the current threads I've been following and commenting on concerns a person who's child was prescribed a drug that is approved for children w/ autism, but the child is under the guideline age/weight, and the purpose of the script is off-label (fyi- that means the use of the drug for that purpose has not been officially studied, nor is it approved for that use by the FDA)

my big beef is that I get really tee-d off by drug companies using desperate parents who PAY THE DRUG COMPANY to basically be experimental subjects.  Then these same drug companies turn around and say their pre-release research is soooo expensive that they HAVE to have a monopoly on the drug for 7 years and force people to pay up the wahzoo during those 7 years.  and the clincher?  those 7 years are also used for research where you, the consumer, are paying the drug company to be a research subject.

What's happening during those 7 years?  they are starting the Long term results of extended use of the drug.  this is WHY we get drug recalls, and law suits against drug companies because of unforseen drug effects in the general population. 

It is the stupidest thing.  unless I am dying, I will NEVER take a drug that does not have a generic version. 

and now for my vaccine gripe- this is why my kids will NOT EVER get flu shots, H2N2 shots, or the stupid new HPV vaccine shots.  MAYBE when they are older, I may let them get a meningitis shot, but I'm still deciding on that one.  it's the same reason.  these companies RACE to get FDA approval, but they all have little if ANY (H2N2 specifically) research done on them. and Flu shots are hit or miss.  they literally guess which strain will be most virulent and make it for that, but there is really no knowing which strain of flu will be most pervasive in any flu season... I really believe unless you have other complications or are at a high risk of infection/respiratory problems, you should ignore the hype.  Healthy individuals are very likely able to fight most viral infections well. 

I get so mad at how backward this all is.

school starts on monday

I try to sound like I'm kidding around when I talk about how excited Joe and I are about Bub going back to school on Monday so I don't sound like a terrible parent.  Then I self-depreciate myself about how I must be a terrible parent to say I'm excited to have Bub back in school.  This tactic usually gets me lots of praise about how much we do for Bub and the challenges we face.  But I don't do it for that reason.  I really do feel bad that I get so excited for Bub to be at school.  and I am happy with how much he loves the routine of school, and the experiences he has there.

But to be honest, I really look forward to the break of not having to be on point 24-7+ while he's home.  And that I think is what I really feel bad about.   I think about parents who have kids that are absolutely non-functional, children that weigh over 80lbs and have the mentality of a 3month old.  When they need a respite, people understand, and it makes ABSOLUTE sense.  and I'm absolutely jealous.
See, look at Bub: he can dress himself, feed himself, can make a few simple meals for himself if left to his own devices, can write a bit, ambulates, can use a toilet properly(when he feels like it)...in other words, he's pretty functional.  People don't really get that parents of kids like this need a break too.  We should be "fine"

And it's not like w/ normal kids, where you sweet-talk your friends to take your kids for the weekend in exchange for you taking their kids for them some other weekend.  If you ask parents who have a special-needs kid, you know how much MORE you are adding to their plate, so that's not an option.  You can't really ask a friend that has normal kids, because they have NO IDEA NO MATTER HOW MUCH YOU TRY TO EXPLAIN of what they will encounter while your child is in their care.  So that's out.  It's not really fair to beg your family either, they need breaks too.  so you have no one.  it really really sucks.  so you suck it up and hope the next week is a little better, and that there will be less poo to clean up off the floor.

or walls.


or ceiling.


I love my Bub.  I can't wait for Monday!!!!

autism and being a mom

I stole/copied/borrowed this from my longtime friend and fellow autie mom Jigglypuff:

Autism Strong Mom

At first I was scared and I cried.
And than I looked around.

He was still my child.
I was still his mom.

Autism they said.

Everything seemed different.
But nothing really changed.

He was still my child.
I was still his mom.

Now I no longer cry.

I am an Autism Strong Mom. 

* from the Four Sea Stars Facebook page

This kinda thing upsets me.  I know that seems weird cuz it's obviously supposed to inspire strength and hope and all that jazz.  Not me, don't know why, maybe because I have grown cynical in my 30s, maybe because I cultivated a sarcastic bend in my 20s, who knows, but this pisses me off.

I have yet to met a single autie parent that "no longer cries"  BULL SHIT.  if they put that out they are LYING!!  they are a dirty lying cheat.  or they are the "refrigerator moms" pop psychology believed in for so long.  or they have a crippling addiction to *numbing drug of choice*. 

I will say this and I will stand by it.  No matter how much you love your child, no matter how strong you get, you will cry, you will be angry, you will blame yourself, you will blame your spouse, you will blame anything that makes any kind of reasonable case to have brought this onto your child, you will be flustered, you will be reduced to a crying sobbing heap of person from time to time because of autism.

It won't last.  you will feel better mostly.  Life will become the new normal.  there will be lots of happiness and laughter and love and understanding.  You will feel "autism strong mom"  but it is transitory.  you will only feel it on the "good" days.  

I hope I am not crushing some poor mom who just got a diagnosis and is trying to find something/anything to help her get thru the transition of diagnosis to acceptance.  I don't want to crush you, but neither do I want to lie to you and make you feel like a failure if you don't achieve this level of ...whatever the hell it's trying to set.  Good LORD we have enough problems learning to help our kids, do we have to put up some unrealistic level of acceptance for each other and wave it around other's faces to make us feel better about ourselves while crushing others???  don't we have enough to do other than play HS games?!?   f-that.

I love my son, and I still cry, and I am strong because I'm honest about it.

"

class party

I actually made it to one of Bub's class events this year...the very last event.  end of the year party.  I attempted to make some peanutbutter ricecrispy treats, but I thought they were pretty oogy, so at the last min, (after my 45min nap after a 12hr shift) I cut up a bunch of fruit and we whisked off to his school.  only 2 other parents showed upin the classroom-I thought that was kinda sad, but the kids loved fruit salad.  I shoulda done my wiggles songs collection for them.  lol.
Zbug was rather intimidated by all the "big kids" and hid behind Bub for awhile, well, until Bub decided he didn't want his kid-sister hanging on him.  Zbug got the hint and found a teenee tiny chair in the corner to sit in, and then found a rocking chair..rocking chairs are endless sources of amusement I gather....

His teacher got big baked potatoes from a local deli for all the kids which was a GREAT idea since there are very few people in the entire world who have a potato allergy.  lol. apparently Bub loved his w/ just ketchup...as always.

Bub will be going to school next week as a voluntary thing.  Here in smalltown ETX the last week of school is optional for kids who are doing fine or didn't miss too much school during the year, Joe decided Bub should get that last week in, I had an aside w/ his teacher to make sure it was ok.

Anyhow.  it's been a better few days, Bub has been controlling his temper better, plus he got over his tummy bug on Monday, so maybe that was the core problem...

who knows with the mind of bub.  After dinner when Z was in bed, me and bub played "Starfall.com" on the PC, he knows how to use a mouse now.  yayee!

Nubs

PS- Bub and Z didn't think the pb treats were oogy...they devoured the whole tray while I was asleep this afternoon.

bad week

well, this was an "ice-cream w/ cherry on top" week. well, no; not really.

I picked up a bug from work last weekend, I have two prime suspects in mind, and am fairly sure what I had, neither requiring antibiotics, merely time flat on my back in bed since monday...time I really didn't have to be flat on my back in bed.  But there I was in bed feeling like a ton of bricks landed on me.  Meanwhile, we find out on Monday that Bub has grown/developed/advanced enough that he doesn't "Need" summer school.  Yayee for Bub, but boo for me and Joe.

We are freaking out.  what the eff are we going to do for 3 months?  no horse riding all summer.... no school... no little friends to expect to see...  no bus ride...  no packing lunches/breakfasts in the am w/ momma... no ritual of getting the backpack and jumpsuit... more...

so I'm in bed half dead and freaking out.  Joe is struggling to occupy a very intent on being contrary Zber, and a Bub who misses seeing momma doing the momma stuff around the house.  I stayed in my room so they wouldn't get sick from kissing on me.  It seems to have worked. so the house is a disaster.

Living room before I got sick

Kitchen before I got sick

Living room Saturday nite

Living room saturday nite

Kitchen saturday nite

I worked Saturday night, and wasn't tired this morning yet, so I tackled the dishes and made french toast.  Joe helped get the kids dressed for church and we went.  disaster.  we made it 1 hour into the service.

Bub was angry that Grandma didn't bring HER Ipad...his wasn't good enough. (Grandma didn't think we would make it since I worked last nite)  Z didn't want to sit still, and kept screaming "no" at every attempt to do something quiet.  Joe was not feeling well.  I had been up for 21 hrs at that point.  we left.  didn't have the power to keep at it.  neither the packet of starburst Grandma fed Bub nor the sensory soothers I was doing to Bub seemed to be helping, and Z was jealous both of us were focusing on keeping Bub from crying/screaming.  So we left church.  All I can say is, I really tried.

I stayed up until 4 today so Joe could start on mowing the lawn, it's been so rainy (thank God for the rain!!!) that he hasn't been able to get to it, and we have a wilderness on our lot that I am heartily ashamed of.  It was so bad that Joe decided to borrow his parent's tractor mower rather than even attempt it w/ our push mower.  well, a belt broke just as he finished the front lawn, so tomorrow while I sleep, he will be purchasing a new belt and attempting to fix it so he can finish the lawn...but in the meantime we are forcasted for more rain in the next day or two.  So the wilderness continues.

My hope of starting a container garden this week will have to wait until at least Thursday.    meanwhile, maybe I can get the house back up to snuff.  maybe. 

I passed out around 4pm today, and got up around 11pm.  Now I'm just trying to motivate myself to NOT go to the 24 hr Whataburger and stay home and start cooking some stuff so Joe can feed the kiddos some good food for the next two days I work and not feed the kids nuggets and hotdogs.  lol    But I really want a cheeseburger and onion rings.  I really suck.  lol

Nite, here's hoping for a better week.  :)  At least I got the kitchen cleaned up this morning. 


nubs

Bub had her beat by 11 months: Autism learning?

Last nite, while I was at work...changing teeney-tiny poopie diapers, mind you...My Zbug discovered how to get out of her crib by herself & sneak up on daddy to deliver a mini-heart-attack surprise.  plus before she came out to scare daddy, she pulled down a dress from a hanger and played "dress-up pretty".

Bub figured out how to crawl fall out of his crib at 13 months.  Z learned to do it 2 days b4 she turned 2.  So what does that mean?   was it that Bub is more physically driven to learn and perfect certain physical tasks as quickly as possible, or that Z's learning is more faceted than Bub's was and she focuses on multiple tasks that are completed at a slower rate vs Bub who gets "stuck" on a task and does it over and over until he feels he's perfected it, and then keeps doing it after it's perfected because it has now become a ritual?

this learning difference in the two of them has me laughing and sad at the same time.

Bub surprised me today, he came running out of his room naked...which usually means some sort of bodily material has exited his body and is lying in wait for me on his floor..but there wasn't anything on the floor.  so I took him to the bathroom expecting him to pee...cuz he prolly started in his pants stopped when he realized it, and stripped to go...but then got distracted.  So he pees then sits down on the potty and poops!  I am super proud of him.

He got all confused on how to wipe up afterwards....so momma had to help teach that.  yayee me.  (no)

It's so odd how he does things, and his rate of learning.  He will get something for a day, then regress for weeks as if he's "thinking about it", then out of the blue he'll try it again...and again, nothing for a while.  then one day he just "gets" it and then does it the right way almost always after that.  it's so odd, and frustrating to deal with.  Joe hopes verbalization will happen this way.  I'm just happy Bub understands speech and directions.

anyhow.  I'm tired, NICU shifts wipe me out.  It's funny when you consider most NICU babies are under 3lbs and they just kick my a**.  but there it is.

nite...off to make Zbug a birthday cake for her "towe" birthday tomorrow.  :)
Nubs

useful applications of PALS around the home...

so today, Little Z gave momma a retro panic attack.  Why retro?  because I didn't have time to panic during the episode and the Nurse in me kicked into automatic without even thinking...

I made her sausage and fried potatoes for breakfast.  She wasn't really into the potatoes, but she was going nuts on the sausage.  Kept shoving small pieces in her mouth, and then forgot how to swallow correctly.

It was a classic episode of infant choking...hands to the neck, eyes watering, face getting red, no vocal output.  Didn't even blink, just pulled her out of the highchair and started doing the pediatric version of heimlech until there was a lovely spray of half-chewed sausage on the floor and a full volume of crying and wailing. 

after I checked her out and she was all smiles and dimples again, I allowed the panic to emerge.

anyone with small children:  take the time to learn Child & Infant CPR.  it is worth the small fee and day in a classroom setting to have the knowledge and instant reaction to a situation that could be absolutely heartbreaking.

Nubs.

So, Joe tells me the kids drove him crazy today while I was at work.  I believe him.  They are both still awake and protesting bedtime.  Z goes to bed at 6:30 normally, Bub is in bed by 7pm.  it is 8:30 right now.  I just changed Z's wet diaper and rocked and sang to her.  She wouldn't settle down, and kept trying to play peekaboo, and pulling off my glasses.  Momma said, "no ma'am"  and put her back in bed. I also fed them before I put them to bed, as Joe didn't realize the pork chops I prepared (uncooked) was intended for him to pop in the oven to cook to feed the family for dinner.

This working days is not working well for me. My kids get hyper when they finally get to see me, right before the go to bed.  hyper and bedtime are not a good mix.

Bub started crying when he heard me get home.  I have no idea why.  then after lots of hugs and kisses, he got hyper that I was home.  after eating he got even more hyper.  he started settling down after we did his bedtime routine, but he is still up.  I hear him playing w/ his "Leapfrog refrigerator DJ" toy (previously referred to as "anni-oo" d/t song #3 on the alphabet 'channel'). He hums along w/ the songs.  his favorites are '20 little leapfrogs', 'Birdie bye bye', and 'the Uppercase letter song'.  He used to love 'Anni-oo' and drew pictures of the little guy dancing the "anni-oo" until momma started singing the song all the time and getting him to do the 'Anni-oo' dance with me.  Now when I ask him to play "anni-oo" he giggles and plays every OTHER song on this thing. 

anyhow.  long day.  I have 1 day off and then 2 more on.  I hope 1 day with momma is enough for the kids to be ok w/ no momma for 2. 

Nite & Nubs.

I'm sure the girl named "Ryan" wished she could bomb me over the phone....

Currently on hold with an online pharmacy that I found that has affordable meds for Bub while we wait for our new insurance to begin in January.  I placed the order on 11/4/11.  On 11/10/11 I was told I should have it yesterday.  I don't.  I know to expect mixups and delays the 1st time using a new service...but come on.  Today is the last day I have his current meds.  I really don't want him to miss a dose.

The website says its being processed...but what does that mean?  that it will be shipped in another week?  It is madness.  All because Bub's med is not a highly used drug, and it's indications for use are limited and must be monitored w/ blood tests and such.  puff.

(Later)

What is really frustrating me right now is that this chick (she said her name was "Ryan", and I responded w/ "really?"  and she got pissed at me...lol) said the payment that I posted on 11/4 for this order didn't go thru until yesterday (11/14), however my bank statement says it cleared on 11/8???  something is not adding up here.  I called back to get an explanation from the manager/supervisor since "Ryan" was prolly lying to me w/ my mocking surprise of her "name", or to be charitable she was reading me a line of crappola that her upity-up told her to spew out at disgruntled part-time housewives like me (having been in middle management at telemarketing companies, I know this to be true since I used to be the manager coaching my employees to read crappola to customers when I knew it was a pile of crappola...which is why I am no longer in telemarketing...but I digress...) so anyhow, I call back, spend 20+ min on permahold, get thru, ask to talk to a supervisor, am told  I will be transfered to said supervisor and then am put on a nameless voicemail...prolly where they put the disgruntled part-time housewives that are barely refraining from swearing and usage of other creative conversational devices.  or maybe this guy had creative listening and thought I said "put me to a nameless voicemail box please"  maybe...I am told I have a MN accent....dontcha know.... puff.

(much later)

I tried to call back again...was again on permahold.  got tired of it and had to give up because I really needed to make dinner for my poor family who had been putting up w/ my dramatic sighs over this all day, plus had to get ready to take Bub to his horseback riding therapy (the only one we can afford right now), and be ready to drive immediately to my PRN job once I dropped him off at home.  so it was busy.  Now that I am home from my 1/2 shift, I logged on to the pharmacy site to see if there has been any change to the status.  SURPRISE.  nothing changed.  sent an offline "instant message" requesting enlightenment and a conversation w/ a supervisor to discuss "Ryan"s snippy attitude with me earlier, because as the day continued, I became more convinced it wasn't me, and I had been VERY patient with her and did not swear once at her...although I did do the record-player technique until I am sure she wished she could bomb me over the phone.

And so, sometime on Wednesday I will try to find a conclusion to this abysmal state of affairs.  meanwhile, I filled yet another week of the risperidone ODT for Bub for the "low low" price of  $70.00.  Yayee for me. Yayee for expensive not popularly used drugs that jack up the price.  puff.

Nubs to all anyway

it's better today, kinda...

well, the dishes are done, most of the laundry is cleaned and put away thanks to Joe's helpfulness this morning.  Unfortunately the brakes on our car did something bad last nite while Joe was coming back from his nite with the boys.  No accidents or anything, but he's at Sears right now attempting to get them fixed.  Bub is at grandma's, and Zber is chillin w/ me, half watching TV and half playing w/ sidewalk chalk.  (alright...really she's kinda EATING the chalk everytime I turn my back....guess I'll be getting out some miralax for her tonight to counter the extra Ca2...puff)


I made Yabluchnyk this morning (Ukrainian Apple Cake), and we have 3 pieces left.  Bub kept sneaking off w/ apple slices while I was doing all the prep work.  I discovered that my egg-cutter also is wonderful for slicing peeled apples into uniform slices...and that Bub is able to help me cut apples now w/o my having to worry if he will slice off his fingers.  Yayee, one more thing I can let Bub help me with in the kitchen!!!

Little Kitty Masquerade and Zber tussle like puppies, and Bub gets concerned/jealous of/for Zber and splits them up which ends in massive Zber crying.  I tell Joe that I have no idea how he does it every day and that YES I WILL get him a membership to the fitness center associated w/ my new job....esp since it has free day-care while you work out and they have no issues/limitations with us bringing our son w/ non-verbal autism.  well...at this time they have no issues with it....that may change after a few times we visit with him....sigh,


Must dash.  Nubs all today.  :)

I know better

I wish my camera was working so I could show you how horrible my kitchen is right now.  Joe made an attempt on the dishes earlier this week, but neither of us actually finished doing them.  At some point in the last 3 days one of the kids (prolly Bub) spilled cereal or graham crackers on the floor and they have been crushed to a fine dust that sticks to my feet as I walk across the floor.  I cleaned the counters at some point yesterday and they are cluttered w/ koolaid stains and I have no idea what else.  My living room is cluttered with toys and clean and dirty clothes and cat toys.  there are unidentifiable crushed crumbs and chocolate soymilk stains all over my couch.
I spent an hour already today picking up all the diapers off the floor of my bathroom when the bathroom trash overfilled with diapers and scrubbing the effin toilet clean and the sink and the floor, and random poo stains off the walls around the tub from Bub poo episodes this week while I was at work.

I can not wait to be back on nights.  when I work nites I can at least keep the mess at bay.  poor Joe is going nuts by the time the kids go to bed and when I get home I'm so tired.  neither of us are doing anything to dent the chaos created by our little darlings. 

I need to do the dishes. If I just start, I'll keep going...maybe...if I am lucky.

Bub did it for two days in a row

That's right.  My Bub has pooped in the potty 2 days in a row.  I am speechless.  he did it on his own.  no prompting from either Joe or I.  Both times it was during his pre-bed-time bath.  I guess he's finally connecting the urge to go with the actual action of pooping.  I am so excited about this.

When we were first going thru adjusting to Bub's diagnosis of autism, there actually was a support group in the area (it's non-existent now)  there were parents and grandparents there that had older kids/young adults with varying levels of ability.  Most of them tried to reassure me that potty training *probably* would happen since Bub has a fairly high level of functioning, and that pretty much it would be around 7 y/o.

At the time, Bub was barely 3, and my heart was falling...4 more years of diapers...if I'm LUCKY??!?!!??!!!!

sometimes, what is said to bring hope will crush the soul of the recipient.  Yeah, that was pretty soul crushing.

but it seems that they were pretty dead on.  I wonder why 7 seems to be the magic number that people told me to expect positive changes.  I have had several people tell me that.  it's odd, and getting harder and harder to dismiss.  Today in addition to the previously mentioned accomplishment, I walked into his room and found him writing his alphabet on a dry-erase board with a washable marker. (the door was closed so no Z-marker incident)  He gets to S on his own now (usually), after "s" he does a row of "H" (all capitals, no lowercase "h") then resumes the alphabet at "U". (I think this is a type of 'elaboration')  He's getting much better with remembering "M"s point down, and "W"s point up.  He's not mixing them up as often anymore.  He is still having some hard times distinguishing between "S" and "5" tho...but then my "5" look like "S" half the time, so peh.

As for my Zber, she is beginning potty training too.  She now knows to pee when we sit her on the potty.  And she is ALL over putting TP in the potty and pulling the flush.  She loves flushing the toilet.  she also loves throwing toys in the toilet if she manages to sneak in there when we are looking...but so far, nothing has gotten stuck, and we have not needed to call a plumber or our landlord. *whew*

She is starting to join in on the hand-movements for itsy-bitsy spider now.  not everytime, but enough to make this mommy all teary eyed thinking about it. (Bub has yet to join in yet...ever.)

nite all.  one more day off and then the next 2 days of my unit orientation (Yayee).

Nubs

Good day w/ a brief bad interlude..

Today was my 1st day at my new job...so lots of orientation and sitting around getting lectured to...about stuff I really do need to know...but will never be able to entirely retain. 

Joe and I decided to go out to dinner WITH the kiddos...I really didn't feel up to cooking, and heck, we "needed" to celebrate my new job.  Plus since we don't do halloween, we wanted to do some kind of alternative for the kids...even tho Bub is oblivious to holidays except Christmas, and Z is still learning the whole holiday thing.  Plus I found 2 free kids meal vouchers for Texas Roadhouse that I won YEARS ago in a March of Dimes activity..so hey- kids eat free...I don't cook...we're all winners!

Unfortunately just before we go, Bub had some issues...having to rush out right after getting home from school to pick me up disrupted Bub's schedule of Mondays enough to have some sensory and emotional challenges.  Bub was getting a little too grabby of Zber to Joe's level of tolerance (I was in the shower), so after a few failed attempts to get Bub to stop, Joe picked him up and carried him to his room to have a cool-down talk about respecting other's space.  Bub got upset and head-butted Joe...not really hard, but he hit Joe's glasses in such a way that the glasses gauged a chunk of flesh off Joe's upper left eyebrow!  Bub ended up hurting the side of his head in this and both Daddy and Son were making lots of "Angry Bird" kinds of noises.

Fortunately, we were able to calm Bub down and maybe this time got it thru his head that he's a big boy now and can't just go around bonking people in the head when he gets mad and impatient. *hope hope hope*

After everyone was patch up (Joe's so lucky I love doing wound care...) we went to Texas Roadhouse, our server was awesome.  we typically don't get good service when we go out with the kids, we typically get rushed out and not a whole lot of understanding about special needs and restricted diets.  She was so helpful, I think we have found our new "family" restaurant (even tho we can only really afford going out 1 time a month typically). 

Now the kiddo's have full bellies and are settling down for bed, and I have a little time to myself before I go to bed. Yayee  for mostly good days  :)

Phone conversations w/ my Hubby while I'm at work

Me- Hi hon, how are you?
Joe- I'm ok now.
Me- How are the kids?
Joe- we're not talking about that.
Me- Oh sh*t, what did Bub do?
Joe- not talking about it.
Me- you need to tell me what he did.
Joe- Well, he wouldn't listen to anything I would tell him, Zber managed to pull off her pants and diaper in her crib and everything was wet and he kept sneaking in to jump on the bed while I was trying to clean her up-
Me- what?  didn't you put zber in a zip-up jammy?
Joe- no, I just used the dora ones from last night.
Me- but you know she did the same thing last nite...
Joe- I just grabbed it cuz it was there.
Me- ok....so what next.
Joe- I made him take a time-out in his room, and when I came back his pants were off and there was a streak of poo across the whole room.
Me- so he had a defiant poo.
Joe- yep.
Me- I'm sorry babe.
Joe- me too.


Ten years ago, I would have never believed this was my life....now, this is my "normal"

be kind to parents w/ special needs kids.  :)

SEE!!!! THIS is why I fear becoming a hoarder!!!!!

So two weeks ago while Bub was doing his horseback riding therapy, I was talking w/ one of the other moms there.  We were bemoaning how quickly the boys were growing and how people stop giving you hand-me-downs around 5 y/o.  Bub is older and considerably bigger than her boy, so I offered to give her some of his size 6 pants that he recently out-grew...not realizing I gave a bunch of them away already to my friend Crystal,  but not to freak out...my home-organizational skills are so crappy, I was sure I'd find some more if I really looked around.  Sadly...I was right.

You see, this week has been really odd for us.  I have 1 shift left at my job before I change to PRN and start my new job on Monday, so It's kinda been like a "crap!  clean and organize the house NOW cuz it will prolly be MONTHS before I have this much time off again!!!!"  kind of week.  I've got the kitchen nearly completely scrubbed down.  Joe deep-cleaned the bathroom yesterday, and Bub's room today...I'm working on Bub's non-functional closet (mainly because we keep it locked so Bub can't poo on the floor in there....)  and my closet, so I find all these bags and boxes of clothes and start sorting.
found:
2 small bags of baby boy clothes 3mo-1 y/o for a friend
2 small bags of size 6 boys pants/shorts for my horse-therapy-mom friend
2 HUGE bags of baby girl clothes 3mo-1yr  (goodwill unless I get a ref to someone nearby that needs/wants it)
1 HUGE bag of boy clothes 4T-6T

Sadly...I really haven't been keeping up w/ the kids clothes...Bub is nearly a size eight and I'm just clearing out the last of his size 4T stuff.  Tho, he did go from a size 5 last March to a nearly 8 this month....so I should get a little credit??  oh well.  Z is over 18 months, but still is too small for most of her 2T stuff...so I had to find that box and make sure it's ready for when she needs it.  I have a ton of clothes for her until she hits 5T, so I have to start hitting the walmart clearance racks for those sizes.  lol!  I got her Christmas dress for this year last May for a dollar.  I am so bad. 

And to make today even more fun, I verified when my insurance will end...before Bub can get a refill on his Risperidone.  I spent some time looking up the cost w/o insurance.  It's nearly $300 for a 30 supply.  BUT that's for the meltaways.  I can get the normal tabs for around $20 for 30 days...so now we have to find out: Will bub take them?  I think he will as they are so SMALL....but I think I can get him to if I bribe him with candy afterwards....maybe...  At least I am crafty and even thought ahead and planned for this outcome.   

Due to this 2 month lapse in healthcare coverage (No WAY I can afford cobra), my MIL is trying to persuade me to get Bub on Social Security for disabilities so he can be on Medicaid/Medicare... I have really not wanted to do that yet.  It's like slamming the book down on hope...like at the end of a Good Friday Service.  I rationally know I will need to do that for Bub, but I made the decision not to do that until he's 10 just so my heart would have a glimmer of hope the autism diagnosis may be altered in some way.  Or at least his expected outcome would be more functional.  And I'm not saying he isn't functional...because he IS very functional, on an ADL level...but they don't test for those things....and those things don't make a difference on any paperwork or rating scale or anything "officially" clinical, just to me and those that deal with and work with Bub on a daily basis.  and that sucks for my little heart.  

So in the next few months or so, I will be detailing my heart-crushing adventures of applying for SS-disability for my son.  Let me know if you have any pointers if you have gone thru it...and I know...don't be discouraged if you are denied the first time...just keep applying and maybe get a lawyer....  sad.

*I was hoping to include pictures...but we still are having uploading issues with the "cheap" digital camera we got Bub for his birthday*  *sorry*

Sundays can really suck...

The worst day in our house is typically Sat or Sunday.  Esp if Joe or I or both of us are sickly on either of those two days.  See...This is how it is btwn all of us....  I worked hard during the week and want to chill out and recoup from my job...Joe worked hard during the week and wants to chill out from the kids.  Bub had a hard week at school being in a disciplined scheduled and wants to not listen to anyone at any time to chill out from the week, Zber is super excited to have everybody home at the same time so She won't sleep during nap-time and insists on waking up at 3am to ensure all the playtime with us all she can cram in to a brief 48 hr period.

I had a mandatory vaccine in my rt deltoid on Friday for my new job.  Seriously...my arm is STILL killing me and I had what felt like a 3-day hangover all Friday and Saturday.  Joe had digestive issues all last nite and today...so he wanted (and did) to hide out in bed out of misery.  Bub wanted to poo on the floor a lot today...at least 3 times just today.  He really hates it when I scrub his fingernails...but like I tell him..."If you are going to touch it, I'm going to scrub it...I see you eat...you forget to use your fork sometimes!!!!"   Zber found a piece either Joe or I missed.  I threw up in my mouth a little...which is odd since I deal with a lot of poo at work too.  Maybe it was because she's my baby...I don't know...either way, puke in the mouth is just not a happy kind of thing.

But back to the vaccine thing...if one little vaccine can eff me up, I who am....(let's be kind...) ...rubinesque...imagine how it can eff up a little baby...and they want to do up to 9 different ones at once?  not to my babies...and not in Texas.  YEA for my philosophical right to refuse!!!  I'm an adult, and it made me have one of the worst head-aches of my life...and you're telling me it won't damage a baby's neurologic tissues?  I'll give the shots, but I sure won't let my babies have them on any one else's time frame but MINE!


grrrr......

picked up a bug

I am feeling really crappy today.  it's pretty sucky cuz I have tons to do, and my next rotation starts tomorrow nite.  my head hurts like hell.  I hate this.

But on the plus side....I HAVE A NEW JOB!!!!  I got hired on at one of our local hospitals in the pediatric department!  Yayee me!!!  I'm still working nights, but I am very cool with that.  I'm really used to it by now, so that isn't an issue.   And yes..this was what my "mystery meeting" was all about. 

I would be bouncing around about this but I'm getting either thru some bug or I'm still recouperating from working all night on Sat-sun in floor stripping fumes. floor stripping fumes are not my friends apparently.  I had the worst headache on Sunday and pretty much slept all day and night. I barely spent any time with the kids the whole day.  I feel like a terrible mom.  :(

Other exciting news....Bub has poo'ed twice in the potty all by himself since last week, and Zber is saying "kitty" and "STOP"  and "y-sssssss" (it's not fully vocalized "yes", but I will take it!).  ECI visitied and Zber is not showing any need for therapies at this time. (whew!)  Masquerade (our new kitty) lets Zber pick her up carry her all over w/o complaint, and Joe fixed our old PC. our brakes AREN'T complete toast (we just needed to add brake fluid).  and we didn't bounce a single thing financially after paying all the bills. 

Somehow, we are doing things right for once.  hope we can keep it up.  :)

Nubs

anxiety attack

I have my "Mystery meeting" tomorrow.   Out of no where around 1pm today, I had a minor panic attack.  I haven't had a panic attack since before Bub was born.  The last one was when I was in EC, and my  Idiot  boss was railing on me for something...I don't even remember what it was about... and I just started hyperventilating and crying hysterically at the same time.  not fun.  I'm surprised he didn't call 911 with what a mess I must have been.
Today was nothing so dramatic.  Just some heart palpations that would best be described as "lurches" and a slight increase to my resp. rate accompanied by the typical thoughts you get when facing these kinds of meetings. I'll be fine.  I already gave myself the Stuart Smalley peptalk in front of my mirror today and Joe has been wonderfully kind, agreeing with me to screw going grocery shopping today, and then not laughing at me when I decided to go 30 min later.  But that's really me in a nutshell, yeah?  I talk all blustery and rebellious, and then cave in and do the right thing after I'm left alone and calm down a bit. 

Shopping sucked as it always did.  I had to buy specialty items that I normally don't because they last so long.  For example: Ground Cardamom was effin $10 for a flipping McCormick spice bottle size.  WHAT?!?  It's not like I'm buying lark-tongues or saffron.  Diapers were upmarked this week, and that bummed me out, so I'm going to have to shop around to get Zber's butt-covers at a decent price. THANK YOU LORD that Bub no longer wears pull-ups and uses the toilet to pee into.  Now...if we could just do something about the frequency of poo getting into the toilet instead of the floor, I would be ever so happy....


Nubs.

link to a fab article about autism parents

Caffeinated Autism Mom- sept 30, 2011

Read it.  It is really a good snapshot of my reality

Doctor visit x2 kiddos

Random Bub elaboration

We did it. We took both kiddos to the doctor at the same time yesterday.

It was and wasn't a nightmare...if you know what I mean...

Highlights:
- Bub stood on the scale all by himself w/o freaking out.  (95 percentile)
- Bub allowed himself to be measured for height
- Zber is nearly 25 lbs and is at 45 percentile for her age (no more underweight concerns!!!!)
- Zber had no issues with her exam
- Doctor gave me NO problems when I asked for a referral to ECI for Zber
- Doctor gave me no "vaccines are important" speech since we decided to skip vaccines this visit

Nightmare moments:
- Bub's ears getting checked (ie- pinning him down amidst loud screaming)
- Bub attempting a great escape from the exam room
- Bub throwing himself off the exam table
- Explaining Bub's special diet to the new nurse
- The nurse doing the initial exam of the kids telling me she wanted to get a job at my facility.....
- Almost forgetting to get a Doctor's note for Bub's school
- Ensuring that they removed ALL traces of medicaid for Bub's coverage...since we don't qualify for it anymore...

So, after we had to get the kids home and fed b4 we could take Bub back to school, he missed his lunch during the appointment.  Thankfully that went well, I tried to stay up until 6pm but passed out in front of the PC watching season 2 of "South Park"  Which is pretty good considering I had been awake for 26 hours by then.  At some random point Joe woke me up for a return call from the "Mystery submission" and I have a meeting about it on Tuesday.

Then this morning I forgot I had a work function and didn't remember until 2 hours after it started.  However, since I am an RN, not a LVN, I am already certified/authorized to do the procedure this training was on, I think it will be ok...but I would have liked to have a refresher on it, so I'm still kicking myself in the butt about forgetting....but to be fair, we were woken up at 5:30 by Bub pounding on the door which scared Zber who then started crying her head off....and Joe was feeling poorly and I was/am still wiped out from my Thursday-friday day, so my head was not where it usually needs to be.

I've been very lazy today.  I did do the dishes, and fed the kids at appropriate times, and gave the kids their baths...so I guess I did what I needed to do.

We got a new kitten yesterday.  We ended up having to give Gunk away to another home because he did not like Zber...he kept spitting at her and acting like he was going to bite her face off.  He's [Gunk] very happy now and has a new cat friend.  I'm glad for that.  This new kitten has 6 toes on each paw, is black and white and is SO mellow around the kids.  Bub is very happy and is learning to pet her softly, Zber hasn't figured out that tails are NOT for grabbing and pulling yet.  we put up the baby-gate in front of the laundry room so the kitten can come and go as she pleases.  Bub wants to play with the kitty litter.  I try not to gag when I find Bub in there doing just that.  If he wasn't before, Bub is now an expert at hand-washing techniques, Nurse style....lol