Amazing to 'could my night get any worse???'

The therapy place in Hastings is AWESOME!!!!! We were supposed to be there one hour - we were there TWO hours and Sam still didn't want to leave. It was a very interesting time to say the least. The OT (occupational therapist) was fantastic and basically evaluated him the whole time to figure out a 'sensory diet'. I was fascinated watching what Sam would do or wouldn't do and why. She had him go down a slide into a tub of dry beans. He absolutely would not go into the beans (I was shocked) she asked him to put his feet in, he said 'NO', then she asked him to put his hands in and he said 'No, look I'm all clean'. Interesting. She put him in a material swing hanging from the ceiling (totally enlcosed so he was 'cradled' inside) and asked if he liked it - he said "No it's gross!" - I laughed but he ended up liking it. I noticed she never let him back out of things, they would count to 30 and then he could get out - or they would come back to it if he was very resistant. THEN, he got to ride a horse. It was amazing to see how absolutely calm he became and then of course they go to go faster - which Sam is all about. She told me they call his type 'crashers and bangers' - due to his seratonin levels he feels the need to crash into things, bang things, hit his head, throw things, etc. It is a sensory thing - not necessarily to be naughty.

I am to use a brush technique on him every two hours to help in stimulating "calming" receptors in the skin, sending calming messages to the brain. I also have to do joint compressions which gently stimulates the same calming effect in his muscles and joints. It will take time to see how this helps him - nothing is an overnight 'cure'. More to come......

Now to the horrible night I had by myself with the kiddos. Gonna make this quick as it is 11:30pm all ready - last night got up with Nasya twice and Sam got up 3 or 4 times. Each time he was in a half sleep/wake state of frustration wanting to rock, and of course it was a huge battle because it was never fast enough. It was not pretty and VERY frustrating. Much of the time he was crying loudly for daddy to come home and the rest of the time he didn't know what he wanted. It was a VERY long and grueling night to say the least. I maybe got two hours of sleep. So, on that note I'm going to bed. Daddy's home and he WILL help out tonight whether he likes it or not!! Welcome home daddy:-)

On a positive note......I had heard of a place in Hastings called Wholistic Therapy. I looked up their website and didn't really see what I thought would pertain to our Samuel - regarding sensory issues, etc. Sensory issues are what we are desperately needing help with at this time and haven't gotten any from our sources so far - I think figuring some of this out will help with much of his aggression, frustrations, etc. Regardless, I decided to call today to see if they did bio-feedback (possibly a future blog...) and long story short - they do sensory therapy AND squeezed us in TOMORROW at 9:00AM!! ABOUT TIME!

K - now to the reality lately - not good to say the least. The exhausting rocking fits have continued - actually they began today at 4:30AM! Fun times here in Andersonland. After rocking and battling, mommy wasn't good enough and he was yelling for daddy. So daddy got out of bed and took over and back to mommy after about 2 minutes. I finally got him back in bed and he woke around 8:15 very unhappy. He was soaked (still not fully potty trained.....he knows exactly what to do and simply does it on his own terms. There are days he goes all day in the toilet and more days where he wants to have soaked pants...whatever) and did NOT want me to change him. I was not about to rock him and get pee all over me so I fought him and battled the kicking and yelling and finally got him changed. He had school today and we were late as usual - 9:15. The reward: when I pick him up he is so happy and always says a few times "Mom, I'm so glad you're here! I love you mom."

Again on a positive note, he woke quite nicely from his nap, came out on his own, and said 'Hi mommy, I'm done with my nap now' we rocked a bit and all was fine. I think I dodged a fit by telling him he could have a frozen fudge bar:-) Hey, whatever it takes sometimes! My Nasya woke and we muddled through the rest of the day. She takes the brunt of a lot of Sam's frustrations. We are really working on understanding his thought process's so we can better diffuse situations. Needless to say, today he was a little difficult to get along with but we survived.

Ok - as promised the story of Sam's conversation at the park. I, unfortunately was not there, mommy was getting some groceries and daddy took the kids to play. I received a text telling me that Sam was talking to a guy that didn't speak English. I immediately started laughing out loud at Wal-mart. Come to find out, Sam kept talking to this guy and wanted to play with his daughter (whom also did not speak English) and he was getting angry with daddy because the guy would not tell him his name. (Sam is so polite and cute, he always says to people 'I'm Samuel, what's your name?':-))) Anyway, I guess the guy was nice and trying to understand but Sam of course does not read social 'cues' he is simply black and white with his understanding. I guess all ended well.

Time for bed.

Okay, Okay......

We'll use John Deere colors for now:-) For my very small but special following.....I WILL post something hopefully tonight:-) My desire is to 'blog' everyday or at least every other day - however, it is not always possible!! Believe me, when I get to bed at midnight I sooooo want to post my days adventures....but my body tells me "you idiot, get to sleep because you KNOW you have to be ready to go full force in a few hours!!" So, I usually listen to my body and not my heart (at least in that circumstance...).

I feel so honored that one or two people get discouraged when I don't have a new post.....trust me, there are SOOOOO many adventures you never hear about. But I'll prep the next posting for you: Sam having a converstation with a dad and daughter at the park - but guess what? - they don't speak English!! (if you know Sam, I'm sure you are laughing righ now); my nights and 'wakings' with Sam; good news for tomorrow; and others.
I bet you can't wait:-)

Tired

Been very crabby today and almost didn't write - I don't like being negative and I feel like I have nothing positive to say right now. Sleep has been horrible for 3 1/2 years for me and it shows. Not sure how 'organized' this blog writing will be - I haven't made much sense all day.....too tired to even organize my thoughts.

Got to bed late as usual (usually due to Sya waking, and getting things done that I didn't have time for during the day, or whatever...) And Don my hubby went golfing at 6:30AM so I had the pleasure of waking to handle the lovely morning once again. The morning was horrible. About an hour of things being thrown and thrashing because Sam didn't want to see/look at or share me with Nasya. In addition to this fun, last night Sam had me up from 3:30-4:30 having to rock and/or throwing fits in his room for one reason or another - he had the wrong drink, I wasn't hugging him right, etc. The crazy thing is - he usually doesn't even know why he's doing it. I was dealing with a ridiculous meltdown yesterday AM for about a half hour. Sya woke up and he would yell "PUT NASYA BACK TO BED" "PUT NASYA IN A PACKAGE" "I HATE NASYA I HATE MOMMY" AND ON AND ON AND ON AND ON.........then he just turned around on my lap, looked at the cartoon on tv and acted like nothing happened. I calmly asked if Nasya could sit with us and he shook his head yes. BIZARRE......that told me right there that much of the time he has no control over what is happening. I have no words to describe how I feel about this.

I don't know why the last month has been so incredibly rough. I try to pinpoint what is happening in his/our lives to determine what might be affecting him. Before this last month, he was doing pretty well. He would wake much of the time (NOT always) in a semi-normal manner. OH OH OH - I just remembered to tell you HE took the initiative to say he wanted to go sit on the toilet to 'poop' last night!!!!!! A POSITIVE!!!!!!!:-) WOA - I cannot even believe the SIZE of the #2's that come out of this poor boy - but he did it and I took pictures!! YES I did! If you would like to see them - you may contact me:-) I'll make it happen. I am a proud mommy - THEN today - he doesn't go to the toilet once - he refuses and says he wants to have pee pee pants. HELP!!!!!! But then again, everything today was a battle, so never mind. He did not get ONE sticker - which is his reward system. More on that later I suppose.

ABOUT DADDY: A little over due - but it IS Father's Day weekend so how appropriate. In a nutshell, Don is a FANTASTIC father!!! I knew when I met him he would be a most amazing father and he is. When he gets home from work - they are both so excited to follow him to the bedroom, sit on his dresser and play with all his 'things' while he changes into 'play' clothes. He is one big jungle gym. Literally:-) Time to ourselves is a VERY rare thing here and it is soooooo difficult to have a few sentence conversation with Sam demanding our attention all the time. It is going to be a challenge to teach him the idea of a two-way conversation AND the fact that you have to wait your turn - HE insists his side of the conversation by getting louder and louder and louder until you acknowledge him - so - needless to say - right now I feel like I do not know my husband. We seem so far apart simply because - by the time we get to bed 11:30 or later, our heads hit the pillows and we're done.

Speaking of......

Clarifications & MORE:-)

I'm playing around with the fonts to see what I like best. I should be napping while the babes are nappinig since Sam didn't let me go to bed until 2:00AM last night (this morning....obviously daddy was gone) but I decided to write a bit. Well, the doctor is testing for strep in both kids in the mean time they have been given meds. Hopefully we'll all be well soon. I know that the 'not feeling well' has contributed to his behaviors. I SURE hope they subside somewhat when he is feeling better. I braved the doctors office with BOTH kids by myself today - NOT usually something I do because of Sam and his outbursts and unrestrained energy AND unpredictable behavior. It wasn't bad - of course they were running about 30 min. late - NEVER a good thing for anyone - but for us REALLY never a good thing. I had all of my ammo - foods; games; drinks; etc. He only had one fit in the waiting area - because I wouldn't go out to the car to get his John Deere to show 'Brandon' in the waiting room. A kid that he immediately latched on to because his shirt was green - CALGON TAKE ME AWAY :-)!! Thankfully the mom and her kids were wonderful!! Over and over he kept asking me his name and wanted me to go over there with him to talk to him. So I did and all was fine. Nasya was just flirting with the older boy who was wonderful with her - most older (middle school) boys wouldn't interact with a toddler as well as he did! They were actually the lifesaver of the 'wait'.

In my first post, I didn't really go into full detail with the morning and after nap episodes - the whole time I am rocking/or daddy is rocking Sam (he usually wants me, probably because I AM his daily routine until weekends) he is usually kicking and yelling saying 'faster FASTER FASTER' so I show him - slow, medium and then fast. Quiets him for a second and then it begins again. Once in a great while he will calm and just let you rock - NOT very often. I am usually trying to get his mind off of it - IE: asking if he wants his chocolate drink; a certain cartoon; orange crackers, etc. Until something works. He is sooooo random - you never know what is going to work or not.

Now to his eating: for a couple years now it has only been PBJ, orange crackers (used to be fishy's - NOT anymore!!), yogurt/yogury drinks, cheese slices, a nutrutious chocolate drink so he gets a little more nourishment and anything with sugar. REALLY want this to change. I am hoping that school will help - his teacher Ms. Anela is GREAT!!! She even wants to come to the house to work with him and see how he is in his own environment - WHAT daycare/school teacher wants to do that!!??? I am grateful!! Anyway - she gets him to lick new things, and by watching the others say 'YUM' or whatever, sometimes gets him to take a bite. If we can get anyone surrounding him to do this - we MIGHT get somewhere. This is typical of Asperger's kids. For him, taste and smell are HUGE issues. After taking a bite of chocolate one night and then going to kiss him, he said "Yuck, whats that smell in your mouth?" I said it was just chocolate!! He gags often if you have him throw something away in the trash - he can't stand the smell. Etc.

OK - well I am going to go do 'nothing' (yeah right!) for maybe a half hour - nice chatting with myself:-) Until later.....AND do remember - God will never give you more than you can handle - I am not being sarcastic.....

PHAT

Well - today was much better. The morning 'fits' only lasted about 30 minutes - however, Samuel was very needy while I was getting ready - it was 'school' day for Sam and we needed to be out the door by 8:20. We have YET to be on 'time' at 8:30. That is my goal - since pre-school starts in the fall and he has to be there by 7:50AM!!! I would choose afternoon class but he still needs a nap - so either way it is a tough call. Anyway - for now he is going to a GREAT 'school' daycare Tuesday and Friday mornings by recommendation of his behavior therapist - in order to work on social skills. And back to today - we arrived at school by 9:10. Not bad....but the way he has been acting, I had an idea maybe he was not feeling well. Tonight, he has a temp. of 101. I digress.....we see the doc tomorrow. It was a nice morning with just the ladies - Sya and I hangin:-) She's a trooper!!

Now to the PHAT - right now I'm fat. The last 6 months have been stressful and I knowingly made a stupid decision to eat whatever I wanted. It shows. CRAP! It's summer and none of my good clothes fit. So - I must stop adding to the stress by feeling ugly and take better care of myself. Will do.

Here goes.....

I decided to give in and start a 'BLOG' - I figured it would be MUCH cheaper than therapy and after the last week (last few years actually!) that I've had, I needed to do something! Going from being a career chick and actress to a full time mom of a 3 1/2 year old son with Asperger's and a 19 month old daughter - oh and I might add a traveling husband - I MUST find an 'out' for my pent up struggles and emotions.

As my husband Don said, he is proud of me, but WHEN was I going to find the time????? Good question. I used to be one of those that had to have all my make-up on, hair done, and decent clothes to go out of the house. Not any more. I also used to have a spotless home picked up ALL the time - I try but there are MANY days I decide it's not worth the stress on top of everything else. SO all that said, as much as I would like a funky looking 'blog' with all kinds of great pics, etc. - I simply don't have the time. Maybe someday you'll get that luxury. For now, you're just getting the facts.

I'd like to start by saying my Samuel is ADORABLE and loving and funny and if you have taken the time to REALLY get to know him - you fall in love with him and understand his 'isms. He is NOT a monster and is not a 'behavior' problem. Don and I are learning more and more about Asperger's and about our son on a daily basis. Much of what he deals with - he doesn't know any better. He needs love just like any other boy. Those of you who have taken the time to help out and truly get to know him - we are so grateful!!! It brings tears to my eyes to watch people interact with him in such a caring and understanding manner.

I'll just give you a snippit of WHY I must do this. TODAY: my Samuel, as usual, wakes around 7:30/7:45 yelling for me in his bedroom. I almost always have to go get him before he starts a meltdown. (If you start to follow my blog you will find out A LOT about Asperger's and what we deal with on a daily basis - no one knows what we experience!) A meltdown for him has gotten to be pretty explosive - I've had soooo many things thrown at me this past week! I wouldn't be surprised if he breaks the tv downstairs if I don't get down there in time when he yells/calls for me. Anyway, I went into his bedroom to pick him up and take him to the rocking chair. I know what to expect. He wants to rock and it is never fast enough. Today's 'episodes' lasted - well let's just say we weren't dressed until 11:00am. (People - this is why I don't get to the phone sometimes and may not get you called for a long period of time) It was a horribly rough morning, thank goodness his sister Nasya (rhymes with Messiah) woke in a very good mood. Only a few times did she cry because Sam did NOT want her on my lap with him. I make it very clear that I will not turn her away - he usually gets off my lap and throws his fits next to us and I/we usally end up getting hit by him or by something he throws. It is exhausting. From 7:45-9:30 it was non-stop. From 9:30-11:00 it was off and on - often! It is very difficult to get ready and to get them ready when he is running after you or running around aimlessly screaming, yelling throwing things because he wants to rock or be held.

Well - I've said enough for my first posting. More on my husband in the next blog - I Just wanted to give you a 'taste' of why I'm here. I adore my children, Samuel is incredibly loving, funny and intelligent - never a dull moment with my Hunky Monkey. Nasya is a dolly - she's sassy but she melts your heart with just a glance - I thank my God for these blessings. I have however, questioned many times the phrase: "God will never give you more than you can handle" - the Journey never expected - Asperger's.