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

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*

medieval solutions to autism, lol

Yes, Joe and I are sometimes.... weird.
In the past we have experimented with weighted therapy for Bub, w/ fair to middling success.  ie- he likes it for a while then refuses to co-operate.  We've done a weighted vest (I've made 2 of them so far), ankle weights, wrist weights, pressure vests, weighted blankets, and weighted toys.  all initially a success, then the novelty wears off, and he loses interest, and the therapeutic results fade.  Pretty frustrating to me, as I am the one MAKING these things for Bub, and researching where I can buy them...and they aren't cheap, even when you make it yourself.

well, Joe is always lurking around trying to find new hobbies to do while the kids are too small to go back to work (being a stay at home dad and all).  a few weeks back, he remembered a friend that used to make chain-mail (we've been wracking our memories and have concluded this friend was named "Rick"...and that's all we remember from 14 years ago...sorry Rick...we suck).  And as Joe has a passion for all things Renaissance Faire, he decided to try making chain mail.  Bub was immediately interested in what Daddy was doing. Bub really likes the coiled wire before Joe cuts them into the rings that get linked together.  Bub even likes to help join the rings together and make a simple chain.

But what was fanstastic was that Bub started putting the chain mail on his body and began to calm down.  and then fell asleep...in the middle of the afternoon!!!!  Bub does not nap unless he is sick with a fever and vomiting down my shirt sick. A chain mail blanket is soothing to him, and for the past 3 weeks, Bub has been taking his chain mail blanket to bed with him and falling asleep within 10 min of turning his own lights off.  I am speechless every night this happens, and it's been happening every night.

Even during his time-outs, if I put the chain mail on his legs, he will sit still in time-out until I tell him it's over, and won't even fuss.   I am shocked speechless by this  (well, it's just an expression).

close up

sleeping Bub, life is good  :)

I think all the weighted stuff we tried in the past were not heavy enough.  I would only get up to 5-10% of his body weight as all the authorities on the subject would recommend.  I think this chain mail is at least 15-20% of his body weight, and it seems to be working, and continuing to capture his attention beyond the novelity phase.
Joe is making another one, I think it's going to be for school.  we'll see.

Nubs

displacement

I am guilty of displacement today.  I didn't want to think about the funeral, so I focused on getting Bub to Therapy on time (we didn't, but the 9:30 people no showed and Bub got moved in...prolly cuz we prepay 2 weeks in advance....) and getting Zbear to her 12 month appointment at 15 months....yeah...lets just say we've been having some scheduling issues lately....

Now I find that Zbear is 31.4 inches and only 21.5 lbs.  She's underweight for her age and her length.  I'm very depressed about this.  Her NP wants me to start adding nut butters to her diet.  I'm scared to try what with all my food allergies and sensitivities and Bub's milk allergy.  So I'm taking a deep breath and going to get some almond butter on monday....after I get some sleep.  Also, Joe and I are debating whether to put her BACK on formula or maybe try adding malted to her soymilk.  I'm thinking we're going to go back to formula...I feel terrible.  She eats really well.  I give her lots of variety. WHO would think MY kids would have concerns w/ being UNDERWEIGHT?!?!?  Bub is a stick, and it looks like Z will be too.  Why do they get my recessive genes?  *sigh*

Z has now completed her polio series.  Next series will be Hib I think...Still deciding.

Then after getting the zb'er home and in for a nap, got ready and went to the funeral.  It was very sad.  that's all I'm going to say about it.

So afterward, I displaced my upset-ness by making dinner, then going to a choir practice that I just realized I got the performance dates wrong and will only be able to be in the production by the biggest finagling I can acheive, and then went to the library.  Found a new book on Autism and newer/researched therapies.  I think I may review it ....SEE, I'm doing it again.

then instead of dealing w/ my sadness, I did the dishes, convinced Bub that he had to clean his butt-butt after pooping, (washed my hands....), and cleaned my refrigerator because I forgot/didn't get around to cooking a chicken, and it went REALLY bad, and since I'm going to be doing more displacement here in a min by cooking several meals to feed my little fambly during my next rotation, I didn't want to put yummy food into a fridge that smelt horrible.  You know the movie Labyrinth?  the "bog of eternal stench"?  yeah, that was my fridge.   409 is my friend.  :p  Plus I'm getting laundry done.

But really, I know what I'm doing, and I know what it is.  But knowing what you are doing and why you are doing it doesn't really help you deal with it in the end...it just seems to make the anxiety about it bigger.

I' haven't had that many people that really meant a lot to me die, the few that have were 100s of miles and years distanced, Not someone I spent time with every week.  But I'm not trying to come out as a caloused person that wasn't close to her dead relatives...it's just that I was really young when they died, or that I was never close to them to begin with...the one exception to that was my Tetka, but I hadn't seen her in years, and then when I tired to call to keep in touch with her,  her English vanished, and my ukrainian is pretty much non-existant,  then her hearing went, and when she died, it was like she was already a memory.  (does that sound awful?)
It's kind of scaring me how hard I'm taking this.  And I did realize he was important to me before all this happened, I know I griped about special requests, but I always did them because beneath the bluster and the drunk sailor impressions I knew it meant a lot to him.

I'm getting all morose again...better displace and make some enchiladas (w/o cheese) and meatballs and brisket.

Nubs.

time for medication?

Ok- I'm putting it out there.
Joe & I have been seriously talking about doing some trials of medications for Bub's behaviors.  For the past 3 months be has begun behaviors of self-abuse, and aggression towards others, mainly towards Joe and I, and started tantruming again..  The realistic part of me and the clinical part of me know that once a behavior begins, it is likely to continue despite my wishing it wouldn't.  This is sucky.  I really hoped medication would not be in my vocabulary for my Bub.  I really was hoping non-pharmaceutical interventions would be enough.  unfortunately, I am rethinking this position.  boo.

I got a call from Bub's Occupational Therapist today.  We have been talking w/ him lately about Bub's progress.  well, really it's been a lack of progress for the past 90 days.  At least he hasn't been regressing...I'd be crying my eyes out over that.  So we are taking a 6 mo break from OT starting today.  He'll still be getting OT at school, and since he qualifies for Extended School Year (ESY) and it is one-on-one unlike his school supplied Speech Therapy which is a group setting; he'll be getting it thru school during this time.
     But I'm pretty depressed about taking a break.  I mean, yes, it's that much more money we'll be saving because therapy is %*&@#! expensive even WITH insurance.  Let's just say I could easily spend half my monthy salary on Bub's therapy.  But it's not about the money, it's about what is best for Bub.  If he is getting more frustration from OT than success/help, then it is better to take a pause and let him mature.  It's just kinda heart-breaking, you know?
     And then I worry about the hassle I'm going to have to go thru to get him back into therapy after 6 months.  I'll have to get a new script from his pediatrician, which will probably include a yearly physical and the yearly lecture on how the CDC recommends Bub having these particular vaccines at this particular time.  Yeah, I know ALL about the CDC.  the CDC can bite me cuz here in Texas, -I- can decide what vaccines my kids get and when, thanks to my philosophical exemption that I keep up to date.  If you don't like it, I will take my medical business elsewhere. 
     So after I deal w/ his pediatrician and the yearly vaccine lecture....then I will have to tackle my insurance co to make sure they will cover it...the whole proverbial, "you stopped doing it, so why start back again?  Is this REALLY medically necessary".  are you serious?!!???!
     Then after that, I will have to have Bub have another OT assessment to find his baseline and then find out what his goals are and then hope he starts making progress again. Bub does not deal well with testing environments....yayee me.

So I'm thinking this might be a good time to start the discussion w/ his pediatrician about meds.  I know risperidone and seroquel can be very helpful.  I have seen them in action on other kids.  I'm also reading up on Abilify which has recently been approved for kids with autism.  Out of the three, Abilify seems to have the least scary side-effects.

This is a crappy situation to be in, and a crappy thing to think about, and a crappy thing to live.  I'm feeling pretty crappy if you haven't guessed.

Nubs

tired tired tired

very tired.
very very tired
SOOO tired...

I just read 7 chapters about cardiac & related drugs.
half of these drugs do 5 different things and the other half have the most bizarre names like fluortetrahydrocondithiaminephrenia
...ok, I'm exaggerating, but still....what the cob? who are these people who name this stuff?
They deserve to be locked up in a room filled with the most boring people for 1 week a year just to comprehend what mass confusion/frustration they have initiated with these drug names.

And in boring...I mean people like the insurance sales man in "groundhog day"... -that- kind of boring person. not dull necessarily...more like annoying but polite so you have no tangible reason to smack them in the face...EVEN THO you REALLY WANT TO....you know?

ok, my sleep deprived mind is jumping off at the deep end. I think to sleep, perchance to dream would be an excellent idea for this student nurse.....

Nitey nite.
Neebs

PS- Bub starts the horseback riding therapy next week! YAYEE!

1st day and already feeling overwhelmed....

So, I had nursing school boot-camp day #1 today. The whole day was in a nutshell...


" This is going to be hard as hell. You better study....we're going to make sure you study your A** off ... we're going to be SOOOO in your business with ALL kinds of support systems in place to make sure you study....so you better study....."


I'm not kidding. I am exaggerating a bit....no one actually used any profanity at all today. but the rest is pretty dead on.

I have a web site that I have to study on, and it tracks what I will do, and how long I spend doing it for at least one of my instructors....

I have loaded all my books onto my laptop and I can access all my textbooks online so even if I forget a book at home, I can read it if I have my laptop or even access to a public computer.

I had to figure out how to make an exception to my firewall to get that feature to work.

But I am excited....like Red riding hood in "into the woods"...."excited and scared" ....remember.... "nice is different from good."

I expect I am tired.

BUT!!!! One of my classmates is going to give me a few contact names of semi-local speech therapists! Yayee! I hope one of them will work out to have bub get extra speech therapy beyond what he will be receiving in school.

Anyhow....love to you all...from a very tired nina....