Ongoing as always

Today I got a call from my daughter's MD's office.  She lad a CBC and CMP done about 2 weeks ago when she came down with pneumonia (which of course she had to share with me).  Her T4 is 13.5

We have to do a Thyroid panel now. 

This would explain many things unless it is elevated from the bacterial infection, which it could be, but her white count was normal. 

 So, bully us.  I take her for labs tomorrow afternoon.  We talked about the lab draw today on the way to ballet class.  Zbug says "I am afraid of the dark and IVs"  I reminded her it's only a lab draw, not an IV.  She calls it a shot.  She can point out what veins are good- lol.  She likes to pretend she gives me shots.  I have to show her the correct place on the arm cuz she'd get me on my wrist- that would be painful.

We finally got word from PRC that Bub's augmentive communication device should be here in 2-3 weeks.

I started the process of getting this thing on Dec 10th of last year.  I bet a bent penny we will get it on Dec 10th (a Thursday).

Both kiddos have glasses now.

(Imagine pictures of my kids until either Chrome lets me access google sites or Explorer lets me upload images)

I am back to working Nights again.

Yeah, it keeps going that way.

not luvin the stones....

Yesterday I was flat on my recliner with a heating pad to my lower back all day, except when I threw up d/t excessive pain.  yeah, that was tasty.  Bub stayed up all night, despite the nightlight and Ipad.  Momma took the Ipad away around 2 or 3, followed by much screaming and kicking of the wall.  FYI, yesterday was exactly a month from when the 1st episode hit.

today I had a "revenge of the stone" that lasted about 2 hours.  I pulled out my nursing book to reacquaint myself to the nursing interventions of kidney stones...pediatrics doesn't see too much of them, oddly enough....*sarcasms*

basically, I need to:

• capture some stones, which I have thusly been unsuccessful at
• drink 3+L fluid daily (hard to achieve when I am at work)
• start a food journal to look for triggers
• Food:
• take 1-2 grams Vitamin C daily
• prolly should eat less meat
• Prolly should cut calcium, but I barely ingest ANY calcium, around 6 oz soy milk daily, and some cheese every couple of days, rarely eat broccoli, never eat Kale or Chard or bitter crap like that....
• prolly should avoid chocolate (!!!!!!)  *boohoohooo*
• prolly should avoid coffee 
• might need to avoid whole grains  (
• I need to make an effort to pee every 3-4 hours (again hard to do at work)

(side story:  there are days (nights) while I am at work where everything is so crazy-busy I don't make it to the bathroom at all (that means 12-14 hours).  I am not the only nurse this happens to. PLEASE be kind to your nurse, we need an opportunity to pee too.)

Check out this lovely fact about kidney stones:

"The pain associated with ureteral spasm is excruciating and may cause the client to go into shock from stimulation of nearby sympathetic nerves"

Medical-Surgical Nursing 5th edition, Ignatavicius & Workman p. 1697

well, Bob's yer uncle.  one more thing to worry about..

Today during the few hours of wakefulness before and after the 2nd stone passed, zbug was on me like glue.  would not leave my side for anything, even Daddy offering her oreos.  I feel so guilty.  I'm at work 3-4 nights a week, w/ the days spent sleeping, then I get this and am cloistered in my room from pain, and that's another 2 days she doesn't see me.  even Bub is missing me, and being clingy while I'm around.  poor Joe looks like wall hit him, and the house like a tornado hit.  my MIL thinks I need to see a urologist, but until I get some stones, there really isn't anything to do except what I listed above.

things I'm pretty sure trigger a stone:  coffee & meat.

apparently I am getting the message that I need to become a semi-vegetarian....and a tea drinker.  How's that for irony....

Joe isn't going to be happy about a reduction of meat consumption in our home.  :(
neither will Bub be pleased since the only vegetables he will consistently eat are frozen peas and frozen corn while they are still frozen, and a raw carrot if he gets to peel it.

So I'm pretty depressed by all this.   but on a happy thought (ok I'm stretching it here):  I get stressed and make a human version of a pearl?!?!  lol!

words of the week

Zbug is starting to have the vocabulary explosion. Her new word that I am pushing  "please"...but she says /pa-layeea/  kinda...I am trying to get it phonically right in my description of her...but it has been nearly 20 years since I took linguistics...so forgive my excesses in my description of her cute attempts at pronunciation.  lol

Also cute from her is:  "Aye-min" after we pray,  "di-purrrr" when I tell her it's time to chop down the Zber tree, and "You Momma" but refusing to say her own name.  I also especially like hearing "NOOOO! No Nap!"  cuz it's funny when I tease her about it, but I really do wish she would just say "yes" to a nap every other day or so.

Too tire to share more.  loves to all.  :)

texas roadhouse

I kinda hate that I love a chain restaurant so much.   One thing I liked to take pride in was that Joe and I would search out little hole in the wall restaurants and out of the way places to find gems that were independently owned and spend our hard-earned monies on someone else who was earning it the hard way as well.

We have found a few really good independent restaurants here in smaller town TX, but I have to admit that I really really love texas roadhouse.

This is the story of my shame:

In my 1st year of nursing school, one of my very close friends got nominated/was self-nominated (I forget details) to chair our SNA fundraiser for March-of-Dimes.  This is a VERY dear cause for her and she did an AWESOME job getting it organized.  Being her friend and the secretary for the SNA, I was at the walk, with Bub,who was freaking out that there were so many people around him.
(sometimes autism rears it's ugly and fearful head no matter how you try to prepare for it)  Well, there was a small group of vendors moving thru the crowd, I think the roadhouse folks found me and Bub hiding near a tree while Bub was having an episode of inappropriate giggles with punching of the tree going on while I was trying to apply pressure to calm him.

I remember they asked if I needed help, No...I do this everyday (stress brings out my bad sarcasm...), then they tried to get Bub to give them a high five, which he did. then they offered me a free kids meal medallion, at first I refused it explaining that Bub was on a very special and limited diet and we really weren't able to take him to most restaurants because of his issues with Gluten and Casein.  they said they were able to make some thing from scratch if asked, and gave me a 2nd medallion.  I smiled my polite smile while thinking "dream on dude".  I threw the medallions in my silverware drawer.  they stayed there for over 2 years.

last October 31st Joe and I were trying to figure out what we could do cuz we don't do halloween.  (FYI- I do celebrate holidays...I just don't like halloween at all)  we were kinda broke (as always) and I remembered the free meal medallions.  By this time Bub is more able to handle gluten although his milk allergy is worse, I called the manager and talked about options for Bub and found out there were quite a lot as most people don't really want a lot of milk on their steaks.  (lol)  so we went, they let us reuse our medallions over and over, it's like there is no limit on them!!!  I love that we can eat there for under $30, and that $30 includes a VERY generous tip to the server that has to deal with Zbug's famous "tossing of the fries" and Bub's occasional screams when he messes up his Ipad.  Joe loves meat so he is happy.  the only catch for me is that we don't go on weekends.  Bub has a hard time when it is crowded, so we're typically there when they open at 4:30, usually on Mondays.  :)

SMH

So today/yesterday (It all melds together for me...) was rough.

Bub woke up screaming at 2am, I helped him get back to sleep, then I couldn't sleep, and Zbug got up around 4 w/ a monster poop.  But at least she didn't decide to strip and smear.  I call that a good night.  I only think she does that because she has seen Bub do it.  She so loves to imitate him...in all the behaviors I'd rather she didn't.

then while finishing up the morning getting ready to go to school routine, I get a call from my family, and end up driving my nieces and Bub to school so my Sister-in-law can get Joe's brother to the hospital.

Then I went to the hospital to give my family some support and encouragement.

then I made dinner for my MIL and nieces so my sister-in-law wouldn't have to worry about the mundane things in life and focus on her husband...who is stable currently.

I crashed around 5pm, and woke up around midnight.  Bub is awake.  I gave him his Ipad and I hope it will lull him to sleep the same way it lulls me to sleep (When I can pry it from his sleeping fingers...)

At some point I took Z out in the backyard to play, which she loved, and gave her a popsicle afterwards.  She knew something was up today because I kept leaving and coming back, and she didn't get to go to the healthy hideaway.

I'm kind of still reeling from all this.  My brother-in-law is the oldest one in Joe's extended family, and he's only 2 years younger than my sister, and my sister already has a major medical diagnosis.  Joe and I are only 2 years younger than him.  I keep thinking: when did we all start getting old enough to have these things happen?  I still have a hard time believing I'm really 38.  that in some ways still seems like an imaginary number that will never really happen.

So now I'm up, doing the housework I had planned on doing during the day.  I have a staff meeting before my shift starts today and somehow I need to get a few more sleep hours before that starts.

nubs

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

The things my parents did to us...episode Ghandi

Today, for some reason Joe and I were talking & I brought up the memory that my parents once took us to see the movie "Ghandi" which is a very long movie.  I think I was 5 or 6, so Ross was like 4 or so, and Anya was around 10 or 11.  I'm pretty sure it was a theater in Uptown on Lake or Lindale.  All I really remember was that it was a LOOONG movie, and very boring.  It was the only time in my life that I remember my dad giving us money to get us our of his hair...usually he threatened us w/ "the Belt"  (which I did get once...but that's another story....) to keep us in line, but I suspect he refrained from that threat (which usually ended in terrified screams and tears) because we were in public and he actually wanted to watch the movie and not have to comfort 3 squalling kids and not get "the look" from my mom. 

So I'm describing this to Joe, how me and Ross bought jujubees, and that it was the worst dried up and old candy we had ever had and how we snuck up to the balcony and tried to hit people w/ the jujus, and how Anya was hissing at us that we would get a huge spanking from dad at home if w didn't stop...and it occured to me....WHY did they bring us to a 4+hr long documentary-like movie?

I called them today to find out.  They claim not to remember exactly.  I asked if it was because they didn't/couldn't find a babysitter?  Dad said he wanted us to learn something.  (he was laughing while telling me this)

I remember lots of different babysitters and only a few that we had more than one time.  I am starting to suspect that the three of us were the "Calvin and Hobbs" of the neighborhood when we were little.

she must have some sharp incisors...

So I'm helping Bub make orange koolaid.  even tho he won't hold up just 3 fingers when I ask him how many is three he stops getting more sugar after putting three 1/4 c. sugar into the pitcher.  I think I can safely assume he DOES in fact understand the concept of "how many is three"  (small flashback to the song on sesame street where the baker drops all his pastries over himself as he walks down the stairs...seriously...why would you carry 12 banana cream pies down a flight of stairs all by yourself?!?!?)song of three

Anyhow....While I'm adding the water Z comes over to see the action.  I didn't actually see this, but this is my interpretation of what happened, because I turned around to a double scream and Bub holding his pointer finger out like it hurt....

I think Bub decided to be naughty and stick his finger in Z's mouth.  Z has had enough of Bub sticking his finger in her mouth, and bit down.  hard. 

Bub's crying, Z is looking confused and I am trying so hard not to laugh, spill the koolaid, and call for Joe to come over and help, and stop Bub before he starts hitting someone or something with his hurt finger because that's what he does when he's hurting.

I fail at not laughing.

I succeed in keeping Bub from hitting people or things.   Bub is mad at me for laughing, but then decides to laugh bc Momma laughing is pretty funny.  (at least I don't snork when I laugh...)

Oh the joys of my kiddos...

Happy Thanksgiving pictures!

the "G" needs a little work....

Broccoli Salad- w/ Bacon!!!  yum!

Momma & Zber!

If I photoshop a tree in the back, we could have our Christmas picture here  :)

This was the 2nd attempt....

She squints when the red light comes on cuz she knows it's about to flash at her...

Just look at that nose!  lol!

Me and my Bub...w/ a mouth full of Dr. Pepper....

Chocolate truffle pie!  Bub devoured his piece.

Happy Thanksgiving!

This year is a year to be thankful about.  Zber is slowly beginning to verbalize, she now will "Moo" with me, and we are still hearing "up" and "no" and "byebye"  Bub is able to write his entire alphabet and 1-20 all by himself w/o any prompting.  Joe has started designing again, and I have a new job in a pediatric unit.

We are going to Grandma Dorlaine's and Grandpa Ken's for Thanksgiving lunch in a little bit. My contribution is broccoli salad and a dairy-free version of Chocolate trufle pie.  One of the BEST chocolate pies I ever had, thank you to Lindy Loo from "Yeah, that Vegan Shit".  but although we are not vegan (at all) vegan recipes are the best for us to use for deserts for Bub's food allergy to all and any milk products.

so I am off to shower and wake zber from her nap (she has been enormously crabby today).  Love you all, and God Bless us all!

Nubs

He's not big on eating vegetation....

I have discussed before how much I hate grocerying, unfortunately, it is my job, as I am the only one willing to spend the time infront of the PC reviewing the circulars and adding ecoupons on to our grocery store cards, and going thru the coupons my wonderful Mom sends me every week.  I am also the only one determined enough to shop to a budget.

I typically set our food budget to around $150-200 for a 2 week period.  this is not much really for a family of 4 with food allergies... and this also includes diapers, cleaning products, self care products etc... so sometimes it is VERY hard to stay on this budget, and I let not-as-important-things go, like junk food, or fancy cleaning products and get a $1.00 bottle of bleach instead and/or a safe store-brand of cereal and marshmallows and make "cereal bars" in lieu of said junk food that my family craves and inhales at alarming speeds which is another reason I don't buy junk food very often.

so I really love the holiday season where I can take advantage of sales like $.49/lb full turkey.  I got a 22lb turkey today for $10 and change.  this is the 2nd one I've bought since Nov1.  I'm thawing it out in the fridge and since I have monday off, and it will prolly only be fully thawed by then, I will chop that sucker up, cook different portions in different ways and then refreeze the cooked meat for later meals.  these things make me happy on paper...on monday I will be cursing myself for doing this to myself because the only alternative will be to let the turkey go bad and toss it, which will make me even more mad and further cursing of self will ensue.

anyhow, today was the biweekly shopping trip.  I spent prolly around 2 hours on and off preparing for this trip, I went to 4 different grocery stores (not walmart!!!!!!) according to the receipts I saved a total of $82.13 by taking advantage of store sales and about a dozen coupons (diapers and wipes were included in this trip)...I don't typically use a lot of coupons as I find certain store brands are more likely to be safe for Bub and are still cheaper than the name brand with a coupon.  I was under my budget by about $13!  the only thing I didn't get that I was planning on was some chicken, and that was because the store had sold out of it for the day.    so Yayee to me...the madness I put myself thru pays off, even if I am all pissy while doing it. 

after getting home I have the madness of putting it all away & cutting up the bulk meats into meal-sized portions.  Plus I have decided that while I am working days this month, I will pre-make the next day's dinner so all Joe will have to do is pop it in the oven so I don't have to worry about my kids eating hotdogs and instant potatoes every day I have to work...or ramen....This really does happen.
I have to constantly remind Joe to make sure he feeds the kids either a veggie or a fruit w/ every meal.  He's not big on eating vegetation, so he forgets the kids need it...and I get mad when they don't get vegetation at every meal, and me mad at Joe is a thing Joe likes to avoid...so you would think I wouldn't need to do the constant reminders...but I do.
we have lots of canned and frozen veggies on hand to help Joe remember.  lol.


nite.

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  :)

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*

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

Meltdown: where the hell did that come from Bub?

Bub had -THE- biggest meltdown I have seen in a VERY long time this afternoon. 

I stayed up very late this morning after work, completing a document I had been working on for over a week.  I passed out on the couch watching Joe play "Angry Birds"....I don't get the allure..

When Bub got home from school around 3pm, I was still passed out on the couch...he attacked me w/ a big ol' smooch on the kisser, so he was in a very good mood.  I still didn't get awake until about 430 tho.  I went outside to grab the mail and heard such screaming coming from inside.

*Sometimes I think our neighbors worry about the noises coming from our house....*

I walk in to find Joe pinning Bub to the couch.  Bub's face is beet red and he's screaming his lungs out.  Joe says he had his back turned for a min, and found Bub attempting to hit Zber.  Obviously Bub and Joe are only intensifying eachother's anger, so I grab bub and convince him to hang out in his room with me.  I locked us both in.  Bub didn't like being locked in his room despite my being in there with him.  He tried to hit me, tried to hit and kick the walls and doors, tried to throw himself on the ground, tried to head-butt me.  I just kept stopping him and tried to distract him with his favorite toys, and getting him to copy momma doing deep breathing while signing "calm down" 

when he stopped screaming so loud and gave up on hurting me or himself, we went to the bathroom to get some APAP meltaways and brushed teeth and did the ACT rinse (tactile stimuli really helps, but it has to be "his" idea these days to make it successful).  so now he's smiling and we make funny faces at eachother in the mirror.

When we leave the bathroom, I announce to Bub that we are going to the kitchen to make his all time favorite dinner of chicken nuggets so he wouldn't remember his angriness and attempt to recapture the mood once he and Z came face to face again.  Momma's rouse was successful, I had bub help me make the nuggets.  He's really good at putting them in the microwave and setting the microwave, but he's always impatient and opens it up before they are done ad tries to eat the "raw" nuggets.

Thankfully, there were no more angry episodes before bedtime, and Bub helped me put new sheets on his bed after he tore his off and flung them on the floor during his meltdown.  He seemed to welcome the idea of bed, and he likes how Momma will play into his ritualistic-ness by setting up his blanket layers exactly right including putting the ani-ooh and camera in his bedding.

I think Zber must have tripped on Bub or did something that physically "hurt" him, because he kept trying to bang a specific body part on me and the walls...he usually only does that when he is actually hurting, not when he is just mad.  I have no idea why it escalated to such a high intensity today tho.  But it is Friday, and I've been at work Tues -Thursday nite. I wonder if this is happening at school.  I'm not getting any notes about it if it is tho.

Joe is worried his resperidone needs to be upped.  I have to remind him that Bub's med doesn't stop the anger and aggressiveness...it just tends to tone it down a bit so behavioral modifications have a chance to sink in.  my poor bub.  Autism sure can throw a loop on you very unexpectedly.

*FYI- Zber was not hurt by Bub...we keep a VERY close eye on things like this and protect both our children to the highest extent*

This posting is a real facebook conversation I had

 This posting is a real facebook conversation I had w/ one of my friends from childhood who also has a son with autism.  Names are changed to protect our children, families, and people who don't get it...

Please enjoy the music....

POSTING ON Facebook:

Article: Son with autism elopes, reminds parents to remain vigilant

Holly:   Henry is prone to wandering. This article really explains the fear and panic you go through as a parent. The last time Henry wandered off I found him at the neighbors house. Since we were planning to go there later in the day, it was the first place I looked. I just pray that he doesn't wander again.

• • Muppethead:   Bub wandered off from us once when a bunch of family was visiting. I don't like having lots of people over anymore because of it. Way too distracting to have people to entertain and risk losing track of where he is. I never want to go thru that again.
    

    41 minutes ago ·
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    Holly:  I feel the same way. I do not have "fun" when we do have people over because I feel that I have to watch Henry the whole time. People probably think I am rude when in mid conversation I bolt because Henry is leaving the room.
    

    38 minutes ago ·
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    Muppethead:  I know. and then other family members get upset because you don't want to do big reunions or holiday get-togethers. Every time I bring Bub to one I am a mess!
    

    37 minutes ago ·  
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    Holly:  Yup I totally agree. The work and the emotional toll being out at something like that is so hard to explain. The older Henry gets the less I enjoy hosting Thanksgiving with everyone. It is my favorite holiday, but at 7 Henry can let himself right out of the house with ease. When he was 4 I could lock the door and feel pretty secure he wouldn't get out. No longer.
    

    31 minutes ago ·
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    Muppethead:  Last Christmas, at grandma's with all the relatives visiting...Bub got so upset he stripped. I was actually happier with that than the time he ran off.
    

    29 minutes ago · ·
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    Holly:  At Christmas I try to pick a room that can be just for Henry. I take him to that room first and we sit down and talk about our safe room. I tell him that if things are too loud or hurting him that he can go to this room to calm his body and get away from everything. Then when I see things getting too crazy for him, I suggest the room. "Henry do you need to go to the safe room?" He usually replies with a very thankful "yes" and off we go to the safe room. (sometimes I wish I had my own safe room...tee hee)
    
    
    Muppethead
  • can I take our string of comments and use it as my next blog entry? would you be ok with that
  • 
    

    47 minutes ago

    Holly:
    

    that is a-ok with me. I am just hoping my family actually reads it. more specifically my in laws. did I ever tell you that *deleted*  asked me when Henry would be cured?
  • 
    

    46 minutes ago

    Muppethead

    • REALLY?!? Did you tell him Henry will be cured when *deleted's* brain starts working?
    • I would be super upset...
  • 
    

    45 minutes ago

    HollyI was super upset, but I know *deleted* is just old and doesn't really understand
  • 
    

    44 minutes ago

    Muppethead

    • Back to the reunion- ... watching Bub streak... *I was laughing my ass off on the inside...*
  • 
    

    43 minutes ago

    Holly
    

    but that is exactly what I was thinking, he will be cured when your "foot in mouth" disorder is cured
    that is super funny on the streaking...it is sometimes nice to be able to look back on it and realize that now people will better understand

    • 
      
  • 
    

    44 minutes ago

    Muppethead

    • I'm sorry you have to go thru that.
  • 
    

    43 minutes ago

    Holly

    • good to hear that there is progress
    • I think there is progress with our family too, it goes in spurts
  • 
    

    42 minutes ago

    Muppethead

    • yes. A lot. oddly..I think Henry has helped MY parents better understand what life w/ Bub is like. They tell me about you and Henry a lot. :)
  • 
    

    41 minutes ago

    Holly

    • that is good
    • did they witness the meltdown at Sunday School Rally day on Sunday?
  • 
    

    38 minutes ago

    Muppethead

    • It would only have been Dad. Mom's in CA
      
      
      
  • We go on like this for another hour or so. It's nice to have friends that get it.  that I don't have to go into great and detailed background with...that I can say "elopement" and they say.."Yes!  That happened to us too!  It was the most horrible thing that ever happened to me!!!"  
    Although, I am not happy that this has happened to my friend...I'm just happy I can talk to her and not get the "yeah...here's another crazy B...run away" look.
    Gnite folks.  :) 

autism vs neurotypical: Zbear

Last night Zbear was up late bc she didn't get a nap until 2pm D/T church and lunch afterwards.  So I had the rare chance of play w/ just her after Bub went to bed bc he had school in the morning.

What was so wonderful for me is that she understands typical "baby" games.  she had a bath and after I finished drying and dressing her we played tug of war with the towel and chase.  Bub never got those kinds of games until he was much older, like 4 years old, and after much patient teaching, over and over and over.  Bub does get games, but it takes a long long time to get the concept thru to his reality, and communicate the give and take of a game, and the understanding the necessity of taking turns.  Z seems to understand this intuitively.

I know this sounds silly to most other moms, but I never saw this before her.  Bub was so atypical that even tho I read about it in my human development classes, psych classes, and Pediatric Nursing classes, it was my reality and I couldn't really imagine what normal development would look like as a reality.

Later on, we played with a truck, where I would push it to her and she would push it back to me.  Bub still struggles with this game.  He'll capture the truck/ball, maybe push it again, but not to me, off into a corner instead as if to say, "you play the game wrong momma". 

But Zber and I played and played.  Her little laugh brought a lot of sunshine into my heart yesterday.  I thank God for both my kiddos and their strengths and weaknesses.

autism and sense of humor

Now my Bub likes to play a joke.  he likes to do "slightly" naughty things while he knows you are watching him, all the while grinning like a cheshire cat.  He also will draw silly pictures to make you laugh, put his toys in a weird arrangement to make you laugh, and do a sneak-attack tickle.   Bub loves laughing.

however, Bub is not so good at being the object of a joke from Daddy....  Joe and Bub were outside after school, Bub is bouncing on the trampoline, being a happy bouncy Bub, Joe is working on chain mail.  Joe sees a school bus go by, and sez, "look Bub, the bus is back, it must be time for you to go back to school now, get your backpack."

Bub's retort?  He went screaming into the house like bloody murder and started crying in the bathroom after slamming the door shut after himself.  I thought a bee got him.  poor guy sobbing on my shirt.  Joe comes in and tells me the above.  Really Joe?  You tell him that after the "throw him in the creek" debacle?

Yea for autism making things interpreted literally, and a Joe that wants to joke around with Bub the way his Dad joked around with him.


Joe...just wait for Zbear to get a little older....

Bub was fine after a few min of me explaining school is over for the day, and we counted and named the days off he has until he goes back to school (Tuesday).

Now I just wish I knew why the thought of going to school was so upsetting... hrm.

Nubs

it's bad when both of us are sleep deprived...

So yesterday, Joe couldn't get Zbear to take her nap until after 2pm...and he chose not to wake her up after I left for work...so she woke up at midnight...spent the rest of the night keeping Daddy awake and crabby, and waited for me to get home (late...thanks Nurse who relieved me....) *insert sarcasm*.

She was all excited for her ba-ba...She even said "Ba-ba!" then ran to the door of our room, waiting for her glorious bottle of soy-formula goodness.  Well, it's 45 min later, she is not asleep yet.  I think I need to get the book "Go the F*ck To Sleep".  I mentioned it to Joe, he has not heard of it yet.  ?!?!?  But he thought it was funny.

Meanwhile, just minuets before I got home, Bub had a coprogenic moment...and I walked in to short-patient daddy cleaning poo off the floor.  What a great way to start Friday...  Bub's in the tub cleaning up.  a short litany of unmentionable oaths streaming from near the floor of Bub's room, and a screamy baby attacking my knee regions.


Oddly, this makes me think of something my wise friend Jon Carlson said to me once when I was 17, and I didn't believe him then...But I TOTALLY get it now...
He said marriages don't last based on love. Commitment makes it last.  At the time, in my HS angst, I thought he was a heartless bastard, and way too jaded being only 19. However...Love does not make it thru poop filled floors, and diapers for 6 years (not fun), and occasional puddles of urine decorating our child's floor, not to mention the infrequent poop murals on the wall.  If all we had was love, we'd be one the the statistic of divorced parents of special needs kids.  Thankfully we have love and commitment.   I used to tell Joe "tough, you're stuck with me" long before Bub came along...I'm glad Joe agrees that I'm stuck with him too.

I love my honey, even when he's washed his hands 3 times and tells me they still smell like poo.

Nubs.

bub...didja HAVE to break my camera?

Yep, he got a hold of it the day he was "sick", cuz I was going to take a picture of him practicing writing while "sick" in bed, opened the door to the room, and find him bopping around his room instead, w/ no pants or underwear on and a big ol' puddle on the floor.
*lovely*

This part is my fault in this...I chased Bub to the bathroom and put down the camera  so I could clean him off while Joe took on the room/floor cleanup.  I promptly forgot about the camera btwn Bub doing a preemptive freakout in fear of momma secretly planning to give him a shampoo while in the bath (I wasn't planning it, but that's what he thinks...), and Zbear screaming because she's jealous Bub is in the tub, and I won't let her in the bathroom.

After bath and room detail, Bub finds the camera, quietly squirrels it into his room, turns it on and pushes the lense back into the camera while it is on...and breaks the gear that operated the lense.  Joe tried to fix it, but the gears were too fargone.

So I won't have pictures for a while.  boo.  Hopefully we will get a new camera around the 1st of the month.  I'm in digital photography withdrawl.  :(

Nubs