Thursday, September 30, 2010

Can we say...Sleep Deprived once again!!

Well - once again I should be in bed since I'm so behind in sleep but I haven't blogged in a LONG time!  Sam is again waking several times in the night to be rocked AND telling us he is not going back to bed - yeah RIGHT!!  Ultimatums do not work for this kid - we are constantly thinking of ways to convince him he NEEDS to go to bed.  We usually 'use' his pediatrician as a crutch - telling him 'Dr. ***' says he needs to go to bed so he will wake up healthy; or he needs to go to sleep so he can be a smart Engineer for John Deere; etc.  But we have to get past the yelling demands of 'Stop talking!!  Don't talk!!  Be quiet!!!!' during the rocking before we can 'convince.'   

Got his swing today - but haven't done anything with it yet - going to need daddy to help put it up somewhere.  TBD.

I usually end up eating my 'breakfast' at 3:00AM since I probably won't get to eat in the 'morning' until 9 or after....I'm usually starving while rocking kids/getting them ready/and dealing with Sam's 'demands' in the early hours.

SO incredibly frustrated for so many sleepless reasons -
1)The weather is soooo difficult to enjoy when you are dragging and out of it!  Had a major headache - for weeks - finally subsided somewhat today and then the lower right back REALLY about the BEST you can be as a mom and wife! 
2)I have had sooo many plans/agenda's/lists I've wanted to get accomplished - sooooooo not possible when I am dragging and miserable and just trying to make it through the day 'successfully' with the kiddos!! 
3)NOT able to be the MOMMY and WIFEY I desire to be - I feel so behind and unsuccessful just because I am NOT in control of how much sleep I get - sooooo frustrating.  I know I shouldn't dwell on it - but it is impossible!

ON THE BRIGHT SIDE:  yesterday (Wednesday) Nasya kept saying 'pawhy, pawhy, pawhy' - potty!!  SO - in a cute little nutshell - she has pottied three times in the last 24 hours in the froggy potty!!!!!  I asked her if she was going to be potty trained by Christmas - she told me YES!!  I'll believe it when I see it.  After Sam's training TWO-YEAR episode - I don't get my hopes up.  None-the-less - YAYAYAYAYAY - she is getting sooo big!!!

One more thing - they are playing together sooooo well - yes still episodes but MUCH better than before - YAY!

Thursday, September 23, 2010

Oh yeah.......

I forgot to mention the other stipulations Sam put on me during the bedtime fiasco.  If I talked during rocking we had to start over.  When we started over, he said I couldn't talk, move my hands, touch his hair, blink, etc.  This is all too common and frustrating.  Kind of like the statues if you read previously.  Oh boy, and if we don't do these things - guess what.......?  Yep, battle.

Going down stairs, he slides his hands down the rails all the way to the end and around the corner until the rail stops; he has to button/zip his shirts & jackets all the way up; the zippers on his pants have to go all the way up; we have to count to five when he brushes his teeth; and the list goes on.    

Good night.

Frisbee and God

I mentioned in an earlier blog about Sam's progress with pretending.  One thing I forgot to mention was the lack of fully understanding 'pretend'.  He has been obsessed with Iron Man - wearing his rainboots, underwear, t-shirt and gloves - VERY manly!!  Much of the time we have to call him Iron Man or he gets frustrated - anyway, when he is pretending to be IM he is full-on with punches, stomping and being rough with us and his sister.  That is one example - not realizing that pretend means just that - you do NOT actually do the hurtful things, etc.

Nasya, Sam and I were tossing the frisbee a couple nights ago - it was GREAT!!   For most of Sams young life - he would not reciprocate playing catch, kickball, frisbee, etc.  He would take off and run with whatever the object was and usually want you to chase him.  NOW - he gets it every now and then!!  We played with the frisbee for quite a while - now he just blames everything on the other person - even when he's throwing into the street - oh well, there will never be perfection:-). 

GOD:  Our lovely and thoughtful neighbor offered to watch the kids for a bit tonight while I got out (to get groceries:-)) - she had never watched the kids before so I was planning on a quick trip - she told me to enjoy and NOT rush.  So I get to dreaded Wallyworld and start trudging through the aisles.  I'm 2/3 of the way done and I see a wonderful young lady that I hadn't talked to in a long time - she had just sent us an unexpected card yesterday - UMMMM a God thing??  Yes.  I needed that - and I/we definitely need MORE God!!  There are plans for us.....

So - I get home at 8:15 - and am in tears by 9:15.  WOW - bed time was ROUGH.  Poor Nasya - she really has learned how to live with/deal with Sam much of the time.  It was all ready past her bed time and Sam was insisting that HE go to bed first but wanted to rock-a-bye.  So - I attempted to rock both of them and kept trying to take him to bed.  He kept yelling - "I didn't say it's time!" or "NO, one more time, one more time."  I cannot put into words the intensity of these situations we have!!  Sya was so tired she needed to go to bed - but when I tried to take Sam to bed - he'd kick, scream, bawl, throw shoes, toys, etc.  Sya would run back to the living room and crawl up on the couch and cover up with my blanket.  This happened three times - I'd just look at Sya and cry as Sam was having his meltdown behind us.  She is such a sweet dolly - and always has to WAIT and tolerate.  It's not fair.  It's almost like she knew she had to wait until her brother chilled out and then she could have her turn with mommy.  So Sam ended up sitting in daddy's chair crying while I put Sya to bed.  I came out and in a complete nutshell - we gave kisses and made up.  It is soooooo frustrating that he does not comprehend OTHER peoples needs/feelings/hurts/etc.  We constantly have to verbalize and describe these things to him......but when he is near 'meltdown' mode there is NO getting through. 

Off to more adventures......night.

Pink Lipstick & MORE Weiner stories!!!

Well, how do you like the PINK??  This is for Lyla the noon busdriver - I ran out to the bus when Sam was being dropped off - Lyla opens the door and says, "Well, he just wiped off my lipstick and I asked him why he did that and he said he wanted to wear it!"  Once again, speechless.  This goes back to 'social issues' and not knowing what is appropriate - REALLY!!??  I tried really hard not to bust out laughing because I could not tell if it made her mad or not......still trying to figure her out.  All I know is Sam and Lyla have power battles everyday - she needs to just let him do everything himself and all will be fine.  Sam does like her - and he often talks about her crazy hair and how she needs to comb it - I just hope he doesn't tell her that!!  She is probably in her late 60's and I think I've given you enough details to figure out her fashion sense:-)  Actually - I asked him later why he wiped off her lipstick and he said he just wanted to 'feel' it - it was sooooo BRIGHT pink I don't blame the guy - he is not used to that  - he's used to mommy wearing 'natural' colors:-)

So - I guess I'll discuss some reality in the middle of my writing today - in other words not so positive.  I am sooo TIRED again - he has been waking around 3:00am (or a few more times....) to ROCK-and wants us to lift him down off his loft bed.  We rock and every time we get up to take him back to bed - "One more time, one more time" and we say LAST time and the battle ensues!  It is maddening!!!  Most people are not 'with it' at that time but he REALLY is NOT with it - he is soooo out of sorts and it takes nothing to start a tantrum/absolute melt-down.  So like I said - maddening!!!  This can go on for an hour - and when big daddy is gone - it is rough to say the least!  So - once again I am lacking sleep - never really got caught up but a few nights of decent sleep was nice.  I guess I just need to skip the 'me' time at 9:30PM and go to bed.  grrRRrRr  OH - and then they both woke up at 6:10AM today - OH HAPPY DAY - OH HAPPY DAY.  I should be getting groceries right now - but I decided to go to therapy instead. 

He has been so impatient, bossy, 'short fused', etc., the last several days.  I continually have to ask him to 'ask nicely' 'say please'', and everything is a battle.  When people ask me 'What are you doing with all your free time now that Sam is in preschool?' - I truly wish they would find a different way to ask that question.  Why?  So I don't want to smack them!!!!  First of all - I am usually soooo tired, it takes me a while to get going enough to get anything done.  Nasya needs me, groceries, PILES of tubs/clothes to sort and get rid of, pictures in tubs since Sya was born  - to sort and put in albums before I forget many of the dates; laundry laundry laundry, change bedding, cook, dog, cats, etc. etc. I digress - remember I am lacking much sleep right now and I probably shouldn't be blogging - but it IS therapy, right!?

OK - for the first weiner story - Sam was pooping yesterday and HAD to have me in there with him.  Well he kept jabbering about his poops and then he says.... "My poopies think my weiner is a water slide!!!"  How funny is that??!!

THEN we are in the kitchen - Sam in his underwear sitting at the table and I hear daddy say, "Hey, where are you going???" as I hear the front door open and slam shut - uh........then daddy laughing hysterically.  Sam went to the top of the steps - whipped it out and peed onto the sidewalk.  Most of our neighbors cannot see well - soooooo....Sam comes in and asks why daddy is laughing.  Daddy fibbed and said Nasya was being funny....after the laughter, consequences.  Boys and their weiners.....sigh.

Monday, September 20, 2010

My weiner wants to rock-a-bye!!!!

Even though my head is pounding and I need to go to bed - I'll write about my babies first:-)  Yeah - so Sam wants to 'rock-a-bye' and I have to go to the bathroom.  He follows me whining and crying and holding his weiner.   So I ask him if he has to go to the bathroom??  NOOOOO I don't have to go!  I asked why he was holding his weiner then??  He said, "Because my weiner wants to rock-a-bye NOW" - really?  He's said sily things like this a couple times this past week (seriously not silly to him - dead serious!!) and I've wanted to say that his weiner can't talk, but I haven't knowing that a mega fit is around the corner.  Tonight I asked - he said, ""MOOOM, it's just pretend.  Rock-a-bye NOOOOOWW!"

Speaking of pretending - nine months ago Sam was sooo literal.  He still is to an extent but he is able to 'pretend' much more than ever.  Nine months ago, a therapist was trying to put a cow in a bathtub and he refused to have the cow in the tub because cow's don't take baths.  This went on for weeks.  That is the mind of an Aperger's individual.  They have to learn to pretend and think outside of the box.  NOW - on his terms of course - he is able to come up with some crazy silly things.  It is still difficult at times - sometimes he is okay being called a nickname and sometimes he is not and will yell "I'M NOT ******** I'm Samuel/or I'm Just a boy!!"  Depends on the day or the hour:-)  Anyway - all this to say he is able to play 'pirate ship' in his outdoor fort, etc.  It is a lot of fun - THANKS to all the people that have been a positive influence in his life and in working with him:-)  PROGRESS!!!!! 

Saturday, September 18, 2010

Making good on the potty training.......

Well we finally took Sam bowling:-)  That is something we promised Sam a year ago - when he finally decided to be completely potty trained (which he has been for a while now - except for 'accidents') we would take him bowling.  Nasya had just as much fun - they were very good and had a blast. 

Sam is loving preschool!!!  We had our IEP meeting a week ago - went very well and I had an opportunity to ask several questions.  Sounds like he is a perfect little angel - GO FIGURE!!  Actually, (a word Sam says often....) kids with AS respond VERY well to structure and ridgid schedules - so I really wasnt' worried about this.  The bus has been the BEST choice - it is one of the things that entices him to get dressed/ready - and gives him something to anticipate - it also helps than John the driver is sooo zippy and happy in the morning:-)  God is in control!  K - back to the meeting - SO - my question is WHEN DOES TRANSFERENCE happen?  When will he figure out that what he learns in the classroom - needs to be practiced or 'transferred' to real life???  I know there is not near the structure at home and in reality - and I'm sure things will fall in to place over time.  Patience my dear, patience.

The only 'frustration' that the teacher has seen was when Sam was playing with another little boy and Sam yelled "Hey, you're not sharing!" - well the boy didn't speak English and that was part of the frustration.  So of course the interpreter had to intervene and all was well.  Sam is the one who keeps the class on schedule - he'll say:  "Okay, hurry with snacks because we have to get on the bus!" 

NO sleep the last two nights - Sam has had a fever and body aches (crabbiness of course) but no other symptoms.  Two nights ago daddy was out of town and Sam woke up almost EVERY hour to rock - and good luck getting him to go back to bed, he'd say:  "ONE MORE TIME, ONE MORE TIME!!"  I was soooo tired the next day.......Anyway, he is better now:-) 

Monday, September 13, 2010


Well, it's time once again for the show "Parenthood" - good, well written show and you can't go wrong with Craig T. Nelson.....  I mention this show because one of the story lines has to do with a family that has a middle school son, Max, who has Asperger's. 

Ironically - when we were discovering that our son quite possibly had Asperger Syndrome - this show was in it's first year on air.  EVERYONE we told about Sam and our possible diagnosis - told me to watch this show - if only I had a dollar for each time!:-) 

I only saw the second half of the season, but it seemed the story line was a bit watered down regarding what a family endures with Asperger's.  If you've met one kid with Asperger's, you've only met ONE kid with Asperger's.  NO two are a like - some are high functioning (large vocabulary and use of words/sentences), some are low functioning (little to no vocabulary), some have many sensory issues while some have few, some have no desire for socializing, some lack social skills - like Sam and his lack of understanding personal space and taking turns in conversation.  It is such a complex condition - I think we will always be learning something new.  

Anyway, Tuesday evenings are the night to watch the show if you are interested......who knows what we'll learn about Max this year!?  

Wednesday, September 8, 2010

Infuriating - to say the least.....

K - finally going to write it:-)   Wow - Love my hunky little, intensely strong-willed Samuel Joseph!! 

Imagine - the simplest things in life:  puting on a shirt; opening a door; picking something up; walking to another room; getting into bed (priceless!!); waking up; cutting a sandwich; AND SO ON.  Well, these are RARELY simple in our home.  Sometimes these one or two second activities can take 30 minutes and involve a mega tantrum. 

Lately, it seems to be getting worse.  Not sure if it's the OCD or just the AS?.  We put him to bed and we have to stand like a statue while he gets under his covers - all the while him saying "Wait, wait wait wait wait, okay - melt, you can leave now."  The whole time he is watching to see if you move - forget trying to leave he'll have a total fit and start all over again.  The other day we were at 'Nana & Papa's' and were going to leave.  He had said goodbye and we were ready to go (or so I thought!) as I proceeded to pick up bags and go out the door - Sam said "NO I need to say bye to papa on the grass!!...over and over....we had the power struggle with nana and I finally said we just need to let him do it and he'll be fine.  He did and he was.  Then we get outside - time to get in the car......another battle (won't bore you with details).  The CONTROL factor is maddening - but living with this, my husband and I really have to pick our battles or it would be an ALL day thing.  Really exhausting.  

We'll make him a sandwich - and always use a cookie cutter to make shapes.  If we don't ASK what shape he wants and does not like the shape we used - he won't eat it.  Almost everything we do involving him is a battle!!

I just started a book called "No More Meltdowns" by Jed Baker, Ph. D.  So far what I'm getting from it is PICK your battles - which ones do you have time for, which ones are learing experiences for him, etc.  Will tell you more as I learn & have TIME to read:-) 

Tuesday, September 7, 2010

Picture Story Practice

First things first.....lets get caught up:-)

Last Friday we had our Wholistic sensory therapy - with none other than Russ the gentle giant horse.  Actually I am concerned that Fridays might be a problem with getting 'horse' time due to them being short staffed,  but we'll try to make it work.  This past Friday they happened to be a bit slow during our time so Kari (his OT) let us go with her to get Russ from the corrals at the farm.  Sam was so excited to take the 'lead' and walk Russ to the therapy corral.  I just enjoyed the walk there and back - getting to see where they keep the animals and even though it wasn't necessarily 'therapy' time - we loved it.  Found out that Russ is 33 yrs. old - most don't live past 30.  That tells me he knows he has a grand purpose and loves helping these kids:-)  He is an amazingly beautiful horse - the OT says she trusts him with her life AND her babies life!! 

Yesterday Sam filled an entire sticker chart and we usually give him a little something for that.  Well, he has been bugging us about some John Deere monster truck set that Don knew about - and thats what he got - they're the 'mini' ones.  Don brought it home and we congratulated him on another FULL sticker reward chart and gave him his small prize.  He says.."Wow, this is a great addition to my collection!"  Okay then Mr. Samuel -glad you're happy:-)

Now for the 'picture story' story......after much frustration with Sam and his not understanding HOW to have a conversation and HOW to wait for someone to listen to him, I decided to read his "Conversation" story before bed.  He listened VERY well and actually wanted to read it again (we also read the LOUD noise story since he doesn't seem to understand HOW to speak quietly) anyway......within the story it talks about letting 'mom and dad say two sentences' while HE listens - before he speaks.  So I decided to practice this......I said, "Okay Sam, it's time to go to bed."  That is sentence number one.  "Let's go rock and give hugs."  That's sentence number two.  Sam says he wants to practice - "Okay mom, it's time to got to bed.  And you can rock-a-bye yourself!"  After laughing hysterically - I told him he did a good job - and yes he got the idea, but I guarantee I'll have to remind him a hundred times before the week is up!!  When we read it again, we practiced listening while the other said a sentence and vice-versa.  This time he said "I like John Deere" and "I like to talk about Iron Man, Tony Stark and Obadiah."  What a silly little man.  He makes me smile.

I still have more to write, however, it is 11:45 PM and after several interruptions it has taken me two hours to write this little ditty!  I actually just heard a thud and Nasya start to cry during the last paragraph - poor girlie, she fell out of her bed so I rocked and calmed her before finishing.  I'll have to write more later this week...........dealing with CONSTANT power struggles and the OCD side of things......IE:  Cracked Corn Dogs, he will not eat!  Try baking one of those and NOT have the bread part actually crack here and there - impossible!!  'Broken' cheese - he will not eat!  And so on......... 

Wednesday, September 1, 2010

"Okay, I'll Let You Do That"

Well, as much as we've been stressed with our little man - he NEVER ceases to amaze us with what comes out of his mouth!  Yesterday we were talking and he was telling me something and says "Understand?"  "Mom, do you understand?"  I just looked at him and shook my head and of course said yes.  Then, as usual we are, I should say HE is making a deal.  He was trying to tell me he could have his Juicy Drop Pop (some ridiculously expensive sucker) BEFORE he had lunch and before he got a sticker on a 'circle' (a reward system).  I would then say, "First, you have lunch, THEN you can have your treat."  Back and forth, back and forth this went until he finally says, "Okay, I'll let you do that."  "Oh you will?" I say.  "Yeah mom, I will let you do that."  Well, glad that was settled.

STATE FAIR yesterday:  Can we say SENSORY overload???!!!!  There was no getting through to him or literally getting him to calm down and listen.  Made for a very difficult time - don't get me wrong, overall we had a GREAT time considering.  However, we did get a lot of stares. First it was the Ferris Wheel - that is ALL he could say - forget any other plans we had initially - we knew we needed to get this out of the way or we were leaving!  Then it was the combines, then the camels ($5 PER person) and then it was HOT DOG and Lemonade!!!!!  And on and on and on......I should add, the issue is NOT only his way or the 'highway' (Patrick Swayze...may he rest in peace) mega meltdown time the issue is he is LOUD the whole time - guess what?  There isn't an 'indoor' voice at the fair!!!

 I don't care about the stares, much of the time people are amused but not when they are trying to sit and have a nice meal.  He was yelling for a bun over and over and over - in a building that is very echoey and full of a lot of people.  A bun is an easy thing, right?  Not when the line is a half-mile long and probably $5 just for the bun!!   Things only got worse and so we left as quickly as we could - Sya screaming the WHOLE way to the car with Sam and Daddy following.  Good times.

Today - "Mom, you've got a situation here."  I repeated what I thought I heard.....he says, "Yeah, you're not cooperating with me!"  He wanted me to put Nasya down so he could continue chasing her.  I had just picked her up because she wanted to be I'M not cooperating!!!  OH and I've also created the situation......once again, glad we got that settled.  It's fun having two BIG boss's and one LITTLE BIG boss in the house - hmmmmm, wonder what our future holds??

Title-Crappy Sleep-CORN DOGS!!!!!

Well, for my faithful readers, you can see I'm playing around with my title.  I guess if there is someone out there looking for a blog regarding living/parenting with Asperger's - I want a title to get their attention.  If you have any ideas - do tell:-)

Sleep once again has not been great to say the least.  There was about a few week span where it wasn't too bad - and then - wah-lah!  Sya, now in her toddler bed, has decided that she wants to continually rock and not every go to bed.  So - we are working on that AND Sam has been waking in the middle of the night again because he wants to rock.  HELP!  Hopefully it is due to schedule changes and will subside.  I've all ready gotten an email from Sam's preschool teacher telling me he wants to sleep in circle time and says he's tired.  So - I informed her that Aspie's typically have sleep issues and he is no exception.   We're working on parents there is only so much we can do - we get him to bed on time - doesn't mean he stays there OR stays a sleep. 

FIRST DAY OF PRE-School:  I am going backwards here but I must tell......He was excited -we had been studying the bus picture schedule and he couldn't wait!  THIS is what we were hoping for - and it has not subsided!!  The bus pulls up (the driver is a very ZESTY 90 some year old man - kidding but he IS old, scares me a bit) welcomes Sam aboard and buckles him in.  I was doing fine - and then the bus drove off.......I cried.  I'm getting choked up now, yes, we talked about how I needed the time and HE needed the structure, but that doesn't change the fact that our boy is getting bigger and more independent.  I love my kids!  Sya has enjoyed NOT being chased and annoyed and I have enjoyed NOT having to break up fights and protect Sya:-)  It is cute to say the least - when Sam gets home - they are both so excited to see eachother!!  Sam will say, "HI Cutie Bug Nasya!"  And of course she smiles and runs or goes after him.......

CORN DOGS - Sam has eaten mini corndogs (two) and a big corn dog at the fair - mostly the bread but a few bites of the hot dog itself is HUGE!!!!!!!  I am sooooo excited for this you have NOOOOOOO idea!!!!!!!  I could count on one hand the number of times he has eaten any type of meat since he was born.  I chalk it up to the texture - which is why we've ALWAYS has issues with him and food and gagging.  PROGRESS!  Maybe by the end of the year we'll have a 5 item 'meal' menu!  WOW.....