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.

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!!!!

50cent is a jerk.

well, he is.  anyone who says someone looks "autistic" as an insult is a jerk.

Thank you Holly Robinson Peete for your eloquent and to the point response to the idjit.  (being a jerk he does not get the respect of correct spelling)

Taking down the tweets is such a half-assed response.  get a spine and apologize.

read Holly's letter to the "idjit"

read an article about what the "idjit" said.

I think I need a 50cent version of the "Summer pinata" from Napoleon Dynamite.

autism and being a mom

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

Autism Strong Mom

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

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

Autism they said.

Everything seemed different.
But nothing really changed.

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

Now I no longer cry.

I am an Autism Strong Mom. 

* from the Four Sea Stars Facebook page

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

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

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

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

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

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

"

class party

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

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

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

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

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

Nubs

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

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.  :)

verbalizing, gardens and crazy people

couple of things...
 
why in the world would anyone take their infant, 3 y/o and a preteen to walmart at 0200 in the morning?  what are you thinking?  I know I'm not mother of the year, but I value my children's sleep and HIGHLY encourage it on a regular basis.  And if the items bought were of an emergency-type nature, I could understand some sort of problem in the home/family that necessitated such a trip w/ little ones, on a school nite...but toddler clothes, and school/art supplies?  really?  wow.  that is a new one for me....

anyhow, I got my container garden going.  I have tomatoes, bell peppers, cucumbers, a couple types of lettuce,  spinach and 2 zucchinni going.  I have no idea if they will survive my ministrations.  my attempt at tomatoes last year was abysmal, although I could blame that on the drought if I tried at all.

Bub surprised me yesterday.  He wanted me to get something for him, and was trying to pull me up from the couch, I asked him what he wanted momma to do and he signed AND verbalized "go!"

I was so happy with that I don't even remember what he wanted.  I think it was kool-aid out of the fridge.  and then this morning, Joe asked him if he needed to go to the bathroom before Daddy, and he verbalized "no".

I am a pretty happy girl right now...pretty proud of my Bub.  yayee.

:)

Nubs

new year, and signs of empathy?

Happy New Year.  Sorry December posts lagged a bit.  Was dealing w/ 2 kiddo's that kept passing their tummy and resp. illnesses to each other and to me and Joe.  Plus working. Plus the everyday challenges of life w/ a toddler and a special needs Bub.  But Bub has been doing really well.  He's writing his alphabet correctly and independently, and his name, and number up to at least 30.  He very fascinated w/ writing right now.  It's very rewarding to see this as a parent.

Then there was yesterday morning.  Joe had an ingrown hair on his neck that was starting to look ookie.  I finally convinced him to let me "fix" it so it wouldn't get all infected and gruesome.  So I'm going at this w/ a tissue and tweezers (sterilized....)  and Bub comes in the room and sees me performing this "operation" on Joe and got really upset and tried to push me away from his daddy. If he was talking I'm sure he would have said, "Mommy, STOP hurting Daddy!  You're making him bleed!!!!"  We both tried to tell Bub that I wasn't hurting Daddy and that I was trying to make his boo boo better, but he ran off to his room very disturbed.  After I finished, I went and got 2 bandaids and asked Bub if he wanted to put a bandaid on Daddy's boo boo.  He did!  He put it on very carefully, and then decided he needed one too.  and the once Daddy was better w/ a bandaid, he completely cheered up.


It was really touching to see that he was worried about Joe, and wanted to help him.  Yayee for my Bub.  :)

She sleeps all nite now

If I haven't mentioned it yet (I get this and my FB postings confused sometimes), Joe and I converted our overlarge walkin closet into Zbear's new room.  It is awesome.  She doesn't wake up around 3-4am anymore because either Joe or I snorked loudly in our sleep (to be honest...it's prolly ME that wakes her up...I am a wrecking ball when I sleep....Joe occasionally has to run away to the couch cuz I'm all over the place....)

Well, she just loves her new room, she likes to play in there by herself...Bub keeps trying to sneak into her room and steal the toys we have decided to make exclusively for Zbear.  Bub has toys he WILL NOT SHARE.  EVER.  TOUCH ONLY IF YOU WANT TO BE HIT.  yeah.  yayee autism OCD rituals based on toys.  Joe and I want to be equitable w/ our kids.  We will never be fair.  It will always be impossible to be fair when their needs and levels of expectations will always be SO incredibly different. (I will not kid myself about the differences in my kids...not gonna do it...)  So to be equitable, we have decided Z will have 2 or 3 toys that stay in her room, and that Bub can't play with unless she brings it out of her room for him to play with.


Now this resolve is kinda hard, because Bub and Z are starting to enjoy the same kinds of toys, but in different ways.  Bub still really enjoys toys appropriate for 18+ months, but then he also enjoys toys appropriate for his our age group (7 y/o), but he still has some toys from when he was 2 y/o that he will not let go...they are too important to him, the elaborations he sets up with them are too ingrained into his self-ness, I have replaced these toys several times w/ exact replicas as they got loved-on too hard (or covered in poo...sometimes cleaning is not a viable option.....)  So he's grabbing her age appropriate toys and doing his elaboration thing with them, Z is not getting what he is doing and does her deconstructionist act on his elaboration which then ends in multiple kids crying, small toddlers being picked up haphazardly and bounced on the couch, and a 7 y/o banging some portion of his body against the wall.   We like to avoid these activities when possible....  So we pretty much keep special toys in the appropriate rooms and have only generic non-attachment formed toys out in the living room and attempt to keep the siblings out of the other's room.  Not an easy task.  Sometimes Bub wants Z in his room, but then he changes him mind abruptly and she gets upset when he's pushing her out.

we stay busy while they are awake....can you tell?  But so far the new room for Z is working out splendidly.  We have a child-free bedroom once more and are pretty happy about it.

Happy December!  Nubs

it's better today, kinda...

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


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

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


Must dash.  Nubs all today.  :)

Bub did it for two days in a row

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

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

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

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

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

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

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

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

Nubs

2nd day

Today I got to meet all sorts of people I will be working with...got my new user ID and passwords that don't work yet, but are promised to work by tomorrow.  Which is especially good since all I do tomorrow is computer-stuff I have to be logged in to do.

I have determined that I will need to bring my own lunches and snacks to work since I have been feeling oogy after lunch the last 2 days.  That kinda sucks cuz it means I need to be pretty proactive and plan-aheady so I don't just get caf' food cuz I didn't bring anything...  boo.

Bub is at Windridge right now, with Joe and Z.  If I haven't shared before, Bub is learning 2-point riding on a new horse named Dancer...again, will post pictures once I get a working camera.  As I mentioned the last few days, Bub is having a hard time w/ controlling his negative emotions in a constructive way.  I am starting to be fairly concerned about it as we are putting all his insurance-covered therapies on hold until my new insurance kicks in.  And I have to get documentation that he has been uncovered for less than 63-days so that his "pre-existing condition" will be covered by our new insurance.  Don't you love how YOU as the consumer have to be on top of these clauses and exceptions to ensure you get what you need.  the only reason I even know about this is that I saw "without pre-existing conditions" in very fine print. and started to ask questions.  yes there is one of "me" in every group to the underinformed HR rep's dismay.  haha-kinda.

Anyhow...hope tomorrow is just as good.  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  :)

link to a fab article about autism parents

Caffeinated Autism Mom- sept 30, 2011

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

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 ·
  • 
    

    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 ·
  • 
    

    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 ·  
  • 
    

    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 ·
  • 
    

    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 · ·
  • 
    

    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

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    44 minutes ago

    Muppethead

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

    Holly

    • good to hear that there is progress
    • I think there is progress with our family too, it goes in spurts
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    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. :)
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    41 minutes ago

    Holly

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

where will it end?!?

I keep adding more blogs to my reading list.  I started by being interested in some bloggers of the day...then I found some gems with the randomiser at the top "next blog" button when I view my own blog (to make Triple sure that it doesn't look *too* stupid and I caught the majority of my not-on-purpose typos)
(Yes, I do put in on-purpose typos....I am a nerd...with my own personal vocabulary and lexicon... ask Joe...)

then I started finding people on the comments of the blogs I read, because their comment was funny...and reminded me of me. (because I am always surprised that other people have the same type of ideas/reactions I do)

I don't even know these people, but I know more about their current lives than some of the people I actually interact with on a daily basis. (not necessarily calling them "friends", you know?!?)

I do comment sometimes...but typically not. I supposed I must seem to be a random lurker when I show up in their followers queue.

Anyhow....It's Thursday morning...I scammed a paid day off, so I don't have to work today...yayee me!  Bub is going to speech therapy at 9, so I can procrastinate making his allergen free lunch...already fed the kiddos and changed the Zbear's pee-pee diaper.  Rowan is dressed and already snuck outside to jump on the trampoline.

It's cute watching him jump.  He doesn't jump like normal kids with flippies and such...he does a kind of moon-walk around the perimeter of the trampoline.  Once I get a new camera, I'll try to post a clip of it.

Also today, Zbear no longer launches into you if you roar at her.  Now she takes a few steps towards you, then remembers she should be "scared" and then runs away screeching with laughter. silly Zber.

Joe emerged from the bedroom around 615 begging me to make coffee.  poor man, his face looked like a fried egg...how could I deny him the coffee.  The kids even went to bed early last night, so I don't know what massacred him...maybe it's the ambiant smoke in the air from all the local wildfires.

*aside*
I was watching the local news a few days ago, and some yokel said "it's spreading like wildfire".  Really.  wildfire spreading like wildfire....I wonder how many grades you made it thru....  wow.  (hope the guy isn't a relative of one of my friends...sorry if he is,,,ET is kinda small that way...)

nubs

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

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