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.
Showing posts with label austim anguish. Show all posts
Showing posts with label austim anguish. Show all posts
Thursday, September 27, 2012
Thursday, August 23, 2012
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!!!!
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!!!!
Friday, June 29, 2012
not-cation
sorry, I've been kinda down, and kinda tired, and kinda overworked (by choice). kinda had Bub throwing toys at me. Kinda had family stuff to do. Kinda felt like my life is being sucked out.
Joe's in the same "kinda" mode...only he doesn't leave the house to be overworked, he's overworked IN the house and leaves the house to relax. I try to not leave the house if I don't have to work.
I've been really bummed out. pretty much have been operating on: work, pass out, spend an hour with the kids while I try to wake up, work, rinse-repeat.
Yesterday Joe convinced me I need to leave the house, and the kids were bouncing off the walls *really* so we got chinese buffet, Bub picked nuggets, shrimpies, fries, and an egg roll. and grapes. and jello. Zbug was stealing Bub's jello. Zbug wouldn't eat her ice cream. Zbug only ate the jello and some grapes (also stolen from Bub). I think Bub's shrimpies had milk in the coating bc Bub started the "inappropriate laughter" routine while we stopped in at payless to get Joe some tennis shoes and Zbug a new pair of "Pretty" shoes, and the only pair that currently fits is her tennis shoes that light up. while she greatly enjoys her flashy shoes, it doesn't really go well with her Sunday dresses. so after sizing her (I worked shoes in HS, so I do this myself since sales-people and my offspring do not mix well) I found several "pretty" and pink-colored shoes and laid them out for Z to examine. she was torn between a pair of Disney(c) sandals that lit up.....some glitter shoes and then the new shoes that she picked......
Crap. I just noticed, Why are all the model shoes size 7????
So the feeling I get about my youngest is that she likes pretty girly stuff, but it better be functional, tough, and easy to put on.
Bub got nothing except mommy drag-pulling-carrying him out of the store as he tried to put shoelaces up his nose while laughing Joe and Zbug completed the purchase. we got home, and both kiddos were put to bed. Zbug slept in her new shoes despite my repeated attempts to sneak in and remove them. Joe thinks this is funny as he accuses me of being a "shoe-girl".
I was a "shoe-girl" once, but I have like 4 pairs now...(excepting my work shoes) and they are all over 4 years old....one pair is around 15years old since it predates Joe. Maybe I am a shoe-girl since I still own them.......but they are really cool....
Despite the lack of new shoes for Bub yesterday, my son was HUGELY happy with the set of Hanes(c) Boxer-briefs I bought him this morning. so happy that he pee'd on the floor enough times to be able to wear each pair today, thus modeling each color and "breaking them in" simultaneously.
yayee me.
Joe is currently out at the health club working off some steam, which will be followed by a round of beer at the local wetting hole with some buddies. all that male-bonding stuff or something since there are no coffee-houses here with random jazz/poetry sessions for him to attend....(that gen-x stuff....)
I however will find my trusty benedryl and snuggle up with that. In rock-paper-scissors, benedryl beats coffee. I have yet to find anyone to argue otherwise.
nub
Joe's in the same "kinda" mode...only he doesn't leave the house to be overworked, he's overworked IN the house and leaves the house to relax. I try to not leave the house if I don't have to work.
I've been really bummed out. pretty much have been operating on: work, pass out, spend an hour with the kids while I try to wake up, work, rinse-repeat.
Yesterday Joe convinced me I need to leave the house, and the kids were bouncing off the walls *really* so we got chinese buffet, Bub picked nuggets, shrimpies, fries, and an egg roll. and grapes. and jello. Zbug was stealing Bub's jello. Zbug wouldn't eat her ice cream. Zbug only ate the jello and some grapes (also stolen from Bub). I think Bub's shrimpies had milk in the coating bc Bub started the "inappropriate laughter" routine while we stopped in at payless to get Joe some tennis shoes and Zbug a new pair of "Pretty" shoes, and the only pair that currently fits is her tennis shoes that light up. while she greatly enjoys her flashy shoes, it doesn't really go well with her Sunday dresses. so after sizing her (I worked shoes in HS, so I do this myself since sales-people and my offspring do not mix well) I found several "pretty" and pink-colored shoes and laid them out for Z to examine. she was torn between a pair of Disney(c) sandals that lit up.....some glitter shoes and then the new shoes that she picked......
| Rejected by Zber |
 | |
| Rejected glitters |
 |
| Dorothy Gale shoes rejected *sniff* |
 | |||
| Her brand new "PRETTY!!!" shoes. |
Crap. I just noticed, Why are all the model shoes size 7????
So the feeling I get about my youngest is that she likes pretty girly stuff, but it better be functional, tough, and easy to put on.
Bub got nothing except mommy drag-pulling-carrying him out of the store as he tried to put shoelaces up his nose while laughing Joe and Zbug completed the purchase. we got home, and both kiddos were put to bed. Zbug slept in her new shoes despite my repeated attempts to sneak in and remove them. Joe thinks this is funny as he accuses me of being a "shoe-girl".
I was a "shoe-girl" once, but I have like 4 pairs now...(excepting my work shoes) and they are all over 4 years old....one pair is around 15years old since it predates Joe. Maybe I am a shoe-girl since I still own them.......but they are really cool....
Despite the lack of new shoes for Bub yesterday, my son was HUGELY happy with the set of Hanes(c) Boxer-briefs I bought him this morning. so happy that he pee'd on the floor enough times to be able to wear each pair today, thus modeling each color and "breaking them in" simultaneously.
yayee me.
Joe is currently out at the health club working off some steam, which will be followed by a round of beer at the local wetting hole with some buddies. all that male-bonding stuff or something since there are no coffee-houses here with random jazz/poetry sessions for him to attend....(that gen-x stuff....)
I however will find my trusty benedryl and snuggle up with that. In rock-paper-scissors, benedryl beats coffee. I have yet to find anyone to argue otherwise.
nub
Wednesday, May 23, 2012
untitled
two days ago, Bub punched me in the arm really hard when I asked him if he wanted to sit with me and watch sponge bob.
after all the tantrum that followed addressing that unacceptable behavior, I bawled on Joe's shoulder for an hour (kids were asleep)
I really feel like my Bub is slipping away again.
after all the tantrum that followed addressing that unacceptable behavior, I bawled on Joe's shoulder for an hour (kids were asleep)
I really feel like my Bub is slipping away again.
Wednesday, April 25, 2012
irony
you know what cracks me up in a way that makes me kinda want to cry?
When I'm on facebook and one of my fellow autie-moms posts about a particular challenging behavior, and all the other autie-moms chime in because we deal with it/have dealt with it.
then you see the comment from the "coworker's son" friend. and at least they are trying to understand
then you look at all the other postings from your friends who have neurotypical kids. and all you see is a huge gulf in realities.
I have no point other than that. I guess I'm just tired this week.
N
When I'm on facebook and one of my fellow autie-moms posts about a particular challenging behavior, and all the other autie-moms chime in because we deal with it/have dealt with it.
then you see the comment from the "coworker's son" friend. and at least they are trying to understand
then you look at all the other postings from your friends who have neurotypical kids. and all you see is a huge gulf in realities.
I have no point other than that. I guess I'm just tired this week.
N
Monday, April 02, 2012
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.
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
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
Sunday, March 04, 2012
Another pleasant valley sunday
So, today I gave Joe the ultimatum talked Joe into going to Church. I sometimes think going to Church is harder on Joe than me for some reason that I have yet to uncover. Grandma & Grandpa were there along with Cousin K. Zbear was really excited to see Cousin K and kept yelling her name all around the foyer and wouldn't get out of the doorway so other people could get in. (#1 of "really?!?")
Bub was pretty excited too. I had him come over to say hi to one of the ladies that has always taken a very kind and caring interest of Bub, and he came over ("really?!?" #2) and dashed away making Momma (me) chase him up the alter area. So I guess he didn't want to say "hi". Puff.
then "really?!?" #3- during announcements, he did it again. yeah. But it was ok. no one flipped out at us.
Now, for some heart-wrenching confessions:
one of my previously unpublished and untalked about reasons for avoiding going to church was right in my face today. I have been praying a lot about forgiving such a small thing, but it was really hurtful to me and I have been having a very difficult time letting go, and it has been one of the reasons Joe and I have not been going to Church for a while. (FYI- Joe likes to give in to me when he can)
Background ramble:
A person did a small thing in June when I was really emotionally fragile after a very hard event at work, but at the time I felt really betrayed because of it. I had really loved this person and looked up to her. and I really don't even know why she did what she did, and I suspect by the way she was acting today she doesn't even realize she hurt me. But hurt I was, and it was kind of ironic because some long time before June I had spent time trying to build her (the person that hurt me) up after she had been hurt by someone else who (now seeing in perspective) probably had no idea that she had hurt the first person in the first place.
(you try writing about convoluted crap without naming names and see how clear you can be....)
Anyhow, so I had decided to not go to that particular Church for a awhile because I was angry and hurt and didn't feel that I would have a heart of worship if I was there and seething about this person, nor did I feel that I had my hurt enough under control to confront this person in a loving way. I was feeling very unloving towards her. I had tried to go to Church, and all I could do was feel mad and not concentrate on the service and stare at her back and hair and be angry and think very unkind thoughts. Made me feel like a hypocrite. I hate hypocrites.
At least I have enough right about me to have realized I was not right in this. So in my patented way of dealing with emotional baggage that overwhelms me, I ran away. Yes, apparently I can read Jonah, and it can be my favorite and the most meaningful book in the OT to me, and Yes, I apparently learn nothing from it- or I should say, I learn the WRONG thing from it.
We tried going to other Churches, but they didn't feel right. yet another little voice saying, "nina, you are a dumbass. deal with the problem, stop running away"
So today, day 1 dealing with the problem. I was polite. I didn't sit behind her. I focused on the message. I had my usual little thought about how I wished they didn't play music during the prayer because it distracts me. She came up and hugged me and told me she missed me. I smiled and said "thanks" and got a little less bent out of shape, and felt a little less like a hypocrite. I'm still trying to decide how I want to confront her about hurting me, but at least I don't feel as angry as I did, and maybe some love is creeping back in.
Bub was pretty excited too. I had him come over to say hi to one of the ladies that has always taken a very kind and caring interest of Bub, and he came over ("really?!?" #2) and dashed away making Momma (me) chase him up the alter area. So I guess he didn't want to say "hi". Puff.
then "really?!?" #3- during announcements, he did it again. yeah. But it was ok. no one flipped out at us.
Now, for some heart-wrenching confessions:
one of my previously unpublished and untalked about reasons for avoiding going to church was right in my face today. I have been praying a lot about forgiving such a small thing, but it was really hurtful to me and I have been having a very difficult time letting go, and it has been one of the reasons Joe and I have not been going to Church for a while. (FYI- Joe likes to give in to me when he can)
Background ramble:
A person did a small thing in June when I was really emotionally fragile after a very hard event at work, but at the time I felt really betrayed because of it. I had really loved this person and looked up to her. and I really don't even know why she did what she did, and I suspect by the way she was acting today she doesn't even realize she hurt me. But hurt I was, and it was kind of ironic because some long time before June I had spent time trying to build her (the person that hurt me) up after she had been hurt by someone else who (now seeing in perspective) probably had no idea that she had hurt the first person in the first place.
(you try writing about convoluted crap without naming names and see how clear you can be....)
Anyhow, so I had decided to not go to that particular Church for a awhile because I was angry and hurt and didn't feel that I would have a heart of worship if I was there and seething about this person, nor did I feel that I had my hurt enough under control to confront this person in a loving way. I was feeling very unloving towards her. I had tried to go to Church, and all I could do was feel mad and not concentrate on the service and stare at her back and hair and be angry and think very unkind thoughts. Made me feel like a hypocrite. I hate hypocrites.
At least I have enough right about me to have realized I was not right in this. So in my patented way of dealing with emotional baggage that overwhelms me, I ran away. Yes, apparently I can read Jonah, and it can be my favorite and the most meaningful book in the OT to me, and Yes, I apparently learn nothing from it- or I should say, I learn the WRONG thing from it.
We tried going to other Churches, but they didn't feel right. yet another little voice saying, "nina, you are a dumbass. deal with the problem, stop running away"
So today, day 1 dealing with the problem. I was polite. I didn't sit behind her. I focused on the message. I had my usual little thought about how I wished they didn't play music during the prayer because it distracts me. She came up and hugged me and told me she missed me. I smiled and said "thanks" and got a little less bent out of shape, and felt a little less like a hypocrite. I'm still trying to decide how I want to confront her about hurting me, but at least I don't feel as angry as I did, and maybe some love is creeping back in.
Wednesday, February 15, 2012
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 crawlfall 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
Bub figured out how to crawl
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
Saturday, December 10, 2011
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...
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...
Wednesday, December 07, 2011
My coffee gets stolen every day
My kiddo's are little coffee-grubbers. They don't go after Joe's coffee very often, mainly mine. Prolly cuz I put Silk and sugar in mine, and Joe prefers his black, mainly.
I get me a cup and sit on the couch, first comes Z pretending she wants a hug, but really she's just sidling up to sneak my spoon and then try to sneak out coffee w/ the spoon. Then Bub realizes I have coffee. He doesn't even try to be sneaky. He just grabs the cup, giggles and takes a few swigs.
It's a good thing I don't drink beer. lol
Joe has found a solution to the red permanent marker Bub decorated his walls with. It comes off if you rub Shout Stain Stick on it and let it sit overnite. It wipes off w/ a wet rag. I tried everything on it, Magic Erasers, nail polish remover, scary recipes I found on the internet and Pintrest...use the stain stick. I would have never guessed. Joe is amazing.
Must go, I work tonight, and I'm going back to a wonder winterland of RSV+
Nubs.
As I wrote this, Bub snuck in the kitchen and poured out half a bottle of Dawn on the floor. Mr. Man is now washing the kitchen floor since he has to clean it up anyway. Sad part, he's still laughing as he's scrubbing the floor. How can we really be mad about it? :)
I get me a cup and sit on the couch, first comes Z pretending she wants a hug, but really she's just sidling up to sneak my spoon and then try to sneak out coffee w/ the spoon. Then Bub realizes I have coffee. He doesn't even try to be sneaky. He just grabs the cup, giggles and takes a few swigs.
It's a good thing I don't drink beer. lol
Joe has found a solution to the red permanent marker Bub decorated his walls with. It comes off if you rub Shout Stain Stick on it and let it sit overnite. It wipes off w/ a wet rag. I tried everything on it, Magic Erasers, nail polish remover, scary recipes I found on the internet and Pintrest...use the stain stick. I would have never guessed. Joe is amazing.
Must go, I work tonight, and I'm going back to a wonder winterland of RSV+
Nubs.
As I wrote this, Bub snuck in the kitchen and poured out half a bottle of Dawn on the floor. Mr. Man is now washing the kitchen floor since he has to clean it up anyway. Sad part, he's still laughing as he's scrubbing the floor. How can we really be mad about it? :)
Sunday, November 27, 2011
Amazing Day, thank you Hartley Family.
Today Joe & I struggled w/ whether or not to brave a church service, and then if we did, what church to go to. We have been struggling with this for a few months for various reasons, one of which that we publicly acknowledge is that the standard 10-11am service start times really wreck havoc on Zber's nap and the rest of our day is that much harder...and as I have stated before, Sundays are typically hard.
Anyhow, we decided to suck it up and go to our "home" church, mainly because I didn't feel up to being in "make new friends while struggling w/ my run-away son" mode. it gets hard. I have to be super cheery to do it. I'm not super cheery lately. so we get to church, Zber makes a dash for the nursery...what? She really wanted to be in the nursery. who am I to argue w/ my child when she gets a stubborn streak surpassing only her father's? fine, the lady in the nursery is wonderful, and just loves Zber, so one less distraction to deal w/ while dealing w/ Bub. I get asked if I want another cat. ???? no. Then I get into the sanctuary and note it is set up for a concert. My whole soul drops to the bottom of my feet. Bub does not deal w/ loud music well. Grandma and Grandpa aren't here. I prepare to leave within 5 min of the music starting. I hate doing that. I gear myself up for this, and I will be leaving almost as soon as I get there.
Here is the amazing part: It was a family that played bluegrass. Bub was completely mesmerized by this family and their music. He sat the whole time and listened. no fussing. no screaming. no trying to run away. He wanted to hold both Joe and my hands. He wanted me to help him clap in time w/ the music. He clapped between the songs all by himself w/o any prompting that it was time to clap.
We gave them a large (for us) donation.
I was teary eyed watching Bub enjoy himself so much.
I am a sap.
The music itself was very inspirational.
I need to trust more that God is giving me the right directions, even when I don't feel up to following them and I'm dragging my feet.
After the service I brought Bub up to the leader of the family (the dad) and told him that Bub has never liked live music and has never sat thru an entire service w/o fussing, and that he loved the music so much. I asked Bub to say "Thank you", and Bub signed "Thank you" and shook his hand. He asked if Bub was deaf, and I had to explain that Bub has autism, and that he can hear and understand fine, he just can't/won't talk *we're still trying to decide that one*. He gave us a CD, but I had Joe put some extra cash in the CD donation box.
If you can inspire my son that much, I will throw money at you. Even tho I'm mostly broke.
If you get a chance check out their website.... The Hartley Family
As always Joe and I got into a "mock" argument about whether or not bluegrass is country. My stand is that it isn't...bluegrass is to country as dixie is to jazz. Joe laughed at me. I know he thinks he's right. I'll let him think it if it makes him happy, cuz right now...I am super happy.
Nubs.
Anyhow, we decided to suck it up and go to our "home" church, mainly because I didn't feel up to being in "make new friends while struggling w/ my run-away son" mode. it gets hard. I have to be super cheery to do it. I'm not super cheery lately. so we get to church, Zber makes a dash for the nursery...what? She really wanted to be in the nursery. who am I to argue w/ my child when she gets a stubborn streak surpassing only her father's? fine, the lady in the nursery is wonderful, and just loves Zber, so one less distraction to deal w/ while dealing w/ Bub. I get asked if I want another cat. ???? no. Then I get into the sanctuary and note it is set up for a concert. My whole soul drops to the bottom of my feet. Bub does not deal w/ loud music well. Grandma and Grandpa aren't here. I prepare to leave within 5 min of the music starting. I hate doing that. I gear myself up for this, and I will be leaving almost as soon as I get there.
Here is the amazing part: It was a family that played bluegrass. Bub was completely mesmerized by this family and their music. He sat the whole time and listened. no fussing. no screaming. no trying to run away. He wanted to hold both Joe and my hands. He wanted me to help him clap in time w/ the music. He clapped between the songs all by himself w/o any prompting that it was time to clap.
We gave them a large (for us) donation.
I was teary eyed watching Bub enjoy himself so much.
I am a sap.
The music itself was very inspirational.
I need to trust more that God is giving me the right directions, even when I don't feel up to following them and I'm dragging my feet.
After the service I brought Bub up to the leader of the family (the dad) and told him that Bub has never liked live music and has never sat thru an entire service w/o fussing, and that he loved the music so much. I asked Bub to say "Thank you", and Bub signed "Thank you" and shook his hand. He asked if Bub was deaf, and I had to explain that Bub has autism, and that he can hear and understand fine, he just can't/won't talk *we're still trying to decide that one*. He gave us a CD, but I had Joe put some extra cash in the CD donation box.
If you can inspire my son that much, I will throw money at you. Even tho I'm mostly broke.
If you get a chance check out their website.... The Hartley Family
As always Joe and I got into a "mock" argument about whether or not bluegrass is country. My stand is that it isn't...bluegrass is to country as dixie is to jazz. Joe laughed at me. I know he thinks he's right. I'll let him think it if it makes him happy, cuz right now...I am super happy.
Nubs.
Tuesday, November 15, 2011
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/ mymocking 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
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
(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
Sunday, October 30, 2011
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. :)
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. :)
Wednesday, October 26, 2011
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*
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*
Sunday, October 23, 2011
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......
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......
Monday, October 03, 2011
Saturday, October 01, 2011
Doctor visit x2 kiddos
 |
| Random Bub elaboration |
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
Thursday, September 29, 2011
happy snoopy dance!
So... I submitted a *mystery* document on Friday. I got a call back about it yesterday at 4:57..right while I'm getting report. Of course I am a good little employee and actually FOLLOW the no cell phones on the floor rule. (I think I am the only one....including my bosses....) so I don't see that I got the call until I took a quick break around 6:45. I wasn't expecting a response for another week or two....so Yayee me lol!
I meant to make cabbage rolls last nite before heading to work, I did the cabbage prep-work before I went to sleep yesterday morning, but I got a case of the lazy when I woke up. It followed me to work, and since I didn't have any emergencies last night, my case of lazies grew. This is not a good mood to be in when trying to stay awake until biz hours to make a return phone call. I'm doing the 1st week of experimental Charge Nurse On-call next week, so fitting this in next week may prove problematic, but I am creative and resourceful....and sleep is only for the lazy..right? oy.
Yesterday Zber fell asleep on the floor 20min before Bub got home from school. Bub gets home sees her asleep on the floor...guess what he did... He picked her up, which woke her up, which made her a crabby crab apple. she's crying her eyes out, and bub is laughing his head off. So what am I dealing with here? Is bub laughing because he thinks it's funny he woke her up and she's crabby(cuz momma had that kind of mean streak in her towards HER little brother when I was a kid) OR is this the "inappropriate laughter" that tends to rear it's ugly head in my little man? either way, it did not help me kick the lazy before going to work. Thank you once again autism for helping to make clear all life's little mysteries.... *insert eyes rolling*
Other than that, once Zber calmed down, the kiddo's were good, and chilled out with me until I had to leave for work. Joe reported that Zber fell asleep in the hall in front of our room waiting for Joe to put her to bed a half hour after I left, and Bub did 2 more pages of homework.
Today I have to tackle much:
- call the callback back
- call the pharmacy for Bub's script renewal
- get Bub to Speech therapy
- gear up for tomorrow's double-death session (both kids see the pediatrician...at the same time)(I'm going to die)
- other things that my poor lazy and sleep deprived head can't remember at the moment but will come crashing into my brain right as I start to nod off giving me a major adrenaline rush and accompanying panic attack. blah.
Nite/morning folks. wish me success? Nubs!
I meant to make cabbage rolls last nite before heading to work, I did the cabbage prep-work before I went to sleep yesterday morning, but I got a case of the lazy when I woke up. It followed me to work, and since I didn't have any emergencies last night, my case of lazies grew. This is not a good mood to be in when trying to stay awake until biz hours to make a return phone call. I'm doing the 1st week of experimental Charge Nurse On-call next week, so fitting this in next week may prove problematic, but I am creative and resourceful....and sleep is only for the lazy..right? oy.
Yesterday Zber fell asleep on the floor 20min before Bub got home from school. Bub gets home sees her asleep on the floor...guess what he did... He picked her up, which woke her up, which made her a crabby crab apple. she's crying her eyes out, and bub is laughing his head off. So what am I dealing with here? Is bub laughing because he thinks it's funny he woke her up and she's crabby
Other than that, once Zber calmed down, the kiddo's were good, and chilled out with me until I had to leave for work. Joe reported that Zber fell asleep in the hall in front of our room waiting for Joe to put her to bed a half hour after I left, and Bub did 2 more pages of homework.
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| Got this from a friend on FB- wish I could credit it- If it's you...I love this sentiment. :) |
Today I have to tackle much:
- call the callback back
- call the pharmacy for Bub's script renewal
- get Bub to Speech therapy
- gear up for tomorrow's double-death session (both kids see the pediatrician...at the same time)(I'm going to die)
- other things that my poor lazy and sleep deprived head can't remember at the moment but will come crashing into my brain right as I start to nod off giving me a major adrenaline rush and accompanying panic attack. blah.
Nite/morning folks. wish me success? Nubs!
Tuesday, September 13, 2011
Sunday, July 24, 2011
oops & more on parenting austim
I have woefully neglected my blogging. sorries.
I'm half heartedly watching "The Proposal" w/ Sandra Bullock and Betty White. So I'm sitting there on my couch watching this, and we get to the scene where Andrew is having a heart to heart with his dad by the shore. they are "arguing" about Andrew's choice of direction of life, which is not what his father wanted him to do...his father wanted him to continue his legacy. Even in this short scene it is obvious that this was the father's life dream for his son. And, being a 20-something post gen-X stereotypical man, Andrew was upset that his father couldn't understand his life choices or maybe that his father didn't want to accept his life choices.
and I immediately realized, I no longer identify with the Andrew character. This is kind of shocking to me. I was identifying with the father. my next thought was something to the effect, "you know, I'm actually really glad I won't ever have that conversation w/ Bub, even if we are blessed enough to ever have that kind of conversation this side of heaven, because I gave up all those kind of dreams for him when I got his diagnosis of autism"
then I started crying. It's not that I don't have dreams and hopes for him, it's that I realized it's not reality to think I'll ever get him to be a soprano in an all boys choir...or that he'll be some big professional of his choosing. or anything that most parents think and wish for their kids. My dream is just to help him be the best he can be, and that Joe and I have the wisdom AND patience to help him achieve what he wants to achieve.
See how weird I am? I take a normal blah scene from a B-movie and turn it into a metacrisis of identity of myself. I think bedtime is in order with a dose of benedryl.
nubs
I'm half heartedly watching "The Proposal" w/ Sandra Bullock and Betty White. So I'm sitting there on my couch watching this, and we get to the scene where Andrew is having a heart to heart with his dad by the shore. they are "arguing" about Andrew's choice of direction of life, which is not what his father wanted him to do...his father wanted him to continue his legacy. Even in this short scene it is obvious that this was the father's life dream for his son. And, being a 20-something post gen-X stereotypical man, Andrew was upset that his father couldn't understand his life choices or maybe that his father didn't want to accept his life choices.
and I immediately realized, I no longer identify with the Andrew character. This is kind of shocking to me. I was identifying with the father. my next thought was something to the effect, "you know, I'm actually really glad I won't ever have that conversation w/ Bub, even if we are blessed enough to ever have that kind of conversation this side of heaven, because I gave up all those kind of dreams for him when I got his diagnosis of autism"
then I started crying. It's not that I don't have dreams and hopes for him, it's that I realized it's not reality to think I'll ever get him to be a soprano in an all boys choir...or that he'll be some big professional of his choosing. or anything that most parents think and wish for their kids. My dream is just to help him be the best he can be, and that Joe and I have the wisdom AND patience to help him achieve what he wants to achieve.
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| Bub lost his 3rd tooth- AND I actually found it! A first for us! |
nubs
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