Friday, June 17, 2011

Yes - you are in the right place.....

I decided to change the background - the other was giving me a headache and this sums up the last year and a half - books, books, books, and searching, searching, searching!!  I have started reading - at least 9 books and have completely finished - ONE.  Most of them I use as reference......

So - I don't have time to go back and read things I have all ready written - there might be times I say something that's all ready been said - so be it.  Moving on - well I am so overwhelmed much of the time with what I am NOT getting done since having children - but this tops them all - I actually forgot my best friends 40th birthday - my husband had to tell me - I NEVER used to forget dates!  Birthdays, anniversaries, etc. - I had cards ready to send a week before.....Now I then I stress about that on top of everything else.  People just need to know I still care....just have a lot more consuming my time/energy & sleep! 

So - Sam's OT described him as this:  imagine a chart - at the bottom of the chart you have 'couch potato' - in the middle you have 'normal' and at the top you have 'overdrive' or 'overstimulated' - Sam is always between normal and overdrive and above.  His nervous system does not know how to 'chill' out - anytime she wants to try something new or different he turns color; fidgets with his ears and feet; and starts negotiating saying 'well, how about.....' He just doesn't want to let go - he doesn't like the feeling or isn't used to the feeling of allowing his body to relax.  We are supposed to do breathing exercises with him - when she tries this it is very difficult for him to slow down and lower his breathing.  We are also trying listening therapy - maybe more on that later.

She said he is one of the most challenging cases she 's seen with these issues.  So - we are NOT CRAZYY!!!!!  Hey everyone - we are NOT crazy and this past week I felt validated in the levels of insanity I've felt in the last four years!!!!!  Now - it's getting him there enough to allow her to work with him.  Ugh - he goes twice a week now and that is expensive enough - I also want to possibly get him in to a Cognitive Behavior Therapist - I have read/heard that AS people REALLY benefit from this since it deals with their way of thinking - which is a HUGE part of the battle.  Okay - enough on Sam for now.....

Everything - I mean EVERYTHING Princess!!!!!  Nasya is gone to the dark side.  It takes her 20 min. to find something good enough to wear out to the sandbox.....if it doesn't have ruffles or princess stuff on it - NO WAY!!  She is a persistent little dolly - but cute:-)  She loves standing at the sink 'washing dishes' - or making a HUGE water mess:-)  she loves taking care of her brother - if he falls asleep before her and we put him to bed - she will take him his baby lamb right away - soooo cute:-)  If she wakes up and he's all ready gone to summer school - she says - "Where's Sammy????" 

Okay - well, going to bed - want to have a good and productive weekend with the BIG DADDY of the house:-)  HAPPY FATHER'S DAY TO THE BEST DADDY IN THE WORLD - WE LOVE YOU!!  I couldn't do it without him - he adores our children and I've NEVER seen a man who looks at his children the way he does.  I knew the first time I met him that he would be an amazing father - and I was right!!! 

Thursday, May 26, 2011

Hunky Dude!!

Awwww - Sam and I had a date again today - his last day of preschool was Tuesday - so we took Nasya to a couple hours of daycare and we went to the coffee shop to see his girlfriend Candy.  He got a hot cocoa and we sat and played with his cars.  We was sooooo good and patient and smiley!!  A little old lady was sitting behind Sam and he turned around and said 'HI!' - she said hi back and 'You're a hunky dude!!'  Didn't expect that out of a 75 year old:-)  THEN as we were getting ready to leave the lady behind me who had been working on her computer, walked by and said "I think he is the cutest kid I've ever seen, even cuter than mine!!" - WOA - talk about a proud mommy:-)  We'll take the wonderful compliments......he was being so sweet and hammy.....

NOW for yesterday- I guarantee we wouldn't have received those compliments!!  Actually he has been reverting back to his bad behaviors/habits/isms.  Yesterday I told my mother-in-law - it was like someone lit a fire under his rear; gave him 5 Jolts (the energy drink of the 90's) and told him to go be as obnoxious and naughty as he can!!!!!  He was a disrespectful, aggressive - ......animal!!!!!  He was actually really good until after his therapy - which actually is the opposite effect therapy usually has on him.  He was soooo wound up - we came home and his cousin was here - poor kid.  Sam was aggressively in his face; he was pulling on his shirt, chasing him, pushing him down and not letting up.  WTHeck???  It was embarrassing - I all ready feel like they don't want to come over and be around him and then he does this - unfortunately they don't see him when he is fantastic - he has the stigma of being 'different' all ready so he almost doesn't even have a chance.   

Sunday we had a surprise birthday party for his dad and grandpa - first he went golfing with them and I was told he was FaNTASTIC on the golf course.  THEN grandma picked him and his cousin up - and met them at the house.  DIFFERENT story - he was yelling at grandma; sassing; saying his 'bad' words; etc. I simply told them to not talk to eachother - otherwise it would have excalated into no return.  I tried my best to keep him occupied with helping me - so between him and his cousin I kept the peace and let them 'help' me get the place ready for the party.  Went 'ok' - but he was not himself the rest of the day.  We made it......and had a great time none-the-less. 

We're back to defiance; calling names; defiance; NOT following directions - always bartering and trying to get it HIS way!!  VERY frustrating as we know that if we hold our ground as parents - it will be constant - and I mean CONSTANT meltdowns; throwing; etc.  When is the battle not worth it??????? 

Monday, May 16, 2011

Nice While it Lasted:-)

The title means just what it says.  Defiance is back to being an issue (prob. still was - I have a feeling it was 'going well' because we were just giving in so we wouldn't have the tantrums/meltdowns!!)and back to using the picture schedule more regularly.  I HOPE it works.  This morning we awful trying to get him to school.  He was sure he was going to stay home and NOT go to school.  I knew daddy was at the office still so I called him to see if he would talk to Sam and try to calm/convince.....he said of course -but Sam wanted NOTHING to do with it.  The bus driver, his bus 'friends' and maybe some neighbors heard and saw his tantrum - ugh.  So - I waved the bus on and started to get myself ready since daddy left at 6:30am.  So - now not only do I have to get myself ready (between fits/demands, etc.) - but Nasya AND get Sam ready and willing to get out the door!!!!  Fortunately - daddy called back and asked if I wanted him to stop and take him in - OF COURSE!!!  He didn't have much time before hitting the road for work - but it was worth it.  Didn't think it was going to work - but he ended up getting bribed with a new John Deere something and it worked good enough.  SO - the deal is - he has to get on the bus every day until school gets out or he loses the John Deere and his new cowboy guns.  HOPE it works.  So help me - if tomorrow he could care less about them, the iPad AND a Happy Meal - we're done.

Saturday - he was jumping on our bed and we both told him to stop it!!  So - daddy goes out of the room and he asks me, "Mommy, are you leaving too or are you going to stay and keep an eye on me?"......hmmmmm - I asked him why I should keep an eye on him and he flat out told me that he wanted me to leave so he could jump and jump and jump on the bed again - at least he's honest, huh??

Monday, May 9, 2011

Wow - New Boy??

I have been wanting to blog about this but I didn't want to 'jump the gun' so to speak.  Don, myself and Sams pre-school teacher all agreed that we have seen some great changes in Sam in the last month!!  I have always believed in miracles - and we have some awesome people actively praying for us and Samuel and what we all go through.

Sam has been very sweet; calm MUCH more often;  the rocking has subsided somewhat - it is not every evening; not every morning; and not 5 times a night.  Once in a while he will go through a phase but not NEAR the frequency it was for 3++ years. 

I started writing this earlier this afternoon and now I am finishing it since the kids are down.....wouldn't you know after I start writing all the GREAT stuff - he starts his behaviors.....mostly with his sister and not getting things the way HE wants them.

I am a little concerned for the summer and being outdoors.  We're going to have to prep him when we go out and go for a bike ride around the neighborhood - if he wants to go to the park and we say no he'll just take off - angrily.   He did this the other evening and both Don and I were outside with the kids - and it was difficult to catch him - imagine if I'm home alone......So I'm having the Speech-Therapist at the pre-school create a couple social stories we can go over before we go out.

Going to bed - night.

Thursday, May 5, 2011


Talk about sensory issues.  The other night I made creamy mashed cauliflower/broccoli and game hens - I haven't made this for a few years.  While I was finishing up, Don took the kids outside and brought them back in when supper was finished.  WOW!!!  Sam came in and started gagging/yelling all the way to his bedroom!!  It is true that the two vegetables mentioned can smell funky - but WOA!  He said he would only eat downstairs NOT upstairs where it 'STINKS!!!!!!!!'  So he RAN downstairs and Don took his PBJ down to him.....we thought no big deal if we took our plates and joined him since it stunk upstairs and not down.  WRONG!! 

We all sat on the floor around the coffee table and Sam (sitting across from me) glared and me and yelled - "Get out of here, get your chickens OUT of here!!!!!!!"  So - he only looked at me - for some reason he didn't yell at Don directly - but that could be because Don's icky food was not right in front of him like mine was.  So I ate this meal (kind of getting grossed out myself at the thought of the chicken being alive and then on my plate) reluctanly by myself upstairs.  You see - he will not eat chicken now since he knows that it is ACtUALLY a chicken....I guess he doesn't eat meat at all but this is definitely an issue when it comes to Happy Meals and the like.  So - little did I know that the meal I was preparing would be a double whammy for the little man - stinky AND chicken!  Better luck next time - I need to start disguising the menu - he won't eat is anyway but at least he won't yell at US:-)

Monday, April 25, 2011

Happy Happy Days

Happy Belated Easter to all!  I must say, Sam has been an exceptional boy lately!!  Yes, still episodes - however, he is really growing up and is really showing respect and manners!!  I will post some pics sometime, showing his magnet chart and 'wall of fame' we've created.  We've pitched the sticker chart for good as he was completely abusing it.  He would throw tantrums until I would give him things to do to earn the 3 or 4 stickers he still needed to get on a cirlce to receive his 'reward' - I was DONE with that!!  Not to mention having to constantly think of cheap rewards that he would even care about!!!! 

Today, he walked in the door to see Nasya in the window and opened his arms and said, "Hi Nasya!!" - is was so sweet!  Yesterday when she opened her door from her nap, he softly walked over to her and said - "Hi Princess Nasya, do you remember we're going to bowling??  Are you ready to go??" - "I love you!"  He is such an awesome little man!! 

He has been waking several times in the night freaking out if one of us isn't sleeping on the floor next to his bed - GRRRRRR.  Not sure what is provoking this.  My back is NOT in good shape and neither of us are getting much sleep.  Sya is waking as well, she keeps getting congested/gross runny noses and coughing - therefore does not sleep well and we all suffer.  I am really really wanting to exercise - but it is sooooo difficult to get motivated when I am lacking sleep.  This needs to become something that I never have to be concerned about - PLEASE GOD!!!!!???

Yesterday was Easter - we spent it out on Dani & Jasper's farm.  A farm is always a hit with the kids!!  I would LOVE LOVE to have a farm.....oh well.  Anyway, Dani and her three kids hosted alone since Jasper is in Afghanistan.  Sam, Nasya, Chloe and Willie played SO great together!!!  Sya was in awe of Chloe's jewelry (we accidentally came home with a necklace - sorry Chloe -we'll return it:-)  So much for thinking she was a tomboy - I think she's an Athletic-Princess-with-a-Tude!!!  Talk about independent, sassy and bossy - she's ONLY 2!!!  Dear Jesus - please help me guide this little girl now through her teenage years!!!!!!!!!!!!!!!!!! 

After lunch - Dani and her brother hid eggs outside and the kids had a blast finding them.  Sam kept calling Chloe 'Bailey' who is his cousin up in Seattle.  Unfortunately we don't see either of them near enough - but one of these days he'll hopefully get them straight:-)!!  HI Bailey, Hudson and BabyBean:-)!!  Miss you....

All this to say - we are so proud of Sam and his awesome interaction with everyone this past week!!  He is properly approaching kids and asking if they want to play; he is not getting aggressive with them when they don't do what he wants; and we HOPE this is a new trend for our family - time will tell!!

Friday, April 22, 2011


There have been soooooo many moments lately where I just have so much fun with Sam and Sya!!  Yes - I still have stress - but try to look at the sweet moments - I wish we could stop Sya in her 2's for a couple years!  She is so funny and goofy and LOVE how she says things.  Sam is really learning how to play with her - he is still VERY aggressive and randomly does awful things to her - but in the good times he makes her laugh hysterically.

Today - right before nap time, Nasya was in the front room and I hear her tell me "No peeking mommy" - I thought about this for maybe ONE second and figured she was up to no good.  Yep - I 'peeked' around the corner and sure enough - she told me the same thing and then confessed to jumping!!  Naughty girl. 

Sensory Fun

Saga #1:  Often, we never know when/where Sam is going to freak over something.  Today we were at the farm and were in the back yard.  There is a grove of trees in the back and the kids wanted to go in them - but wanted me along.  I thought they were scared - but come to find out - Sam wouldn't go in because of all the pine-needle tree branches in the way - so I moved them (so I thought) and still managed to scrape along one or two - on his head.  THE SKY came falling down!!!!!!!  He freaked out for a period of time and of course grandma doesn't always understand and asked "Now whats wrong with Sam?" 

Saga #2:  Then we went inside for a short bit before leaving.....Sya likes to play 'tea' so she was playing with all the mugs grandma has on her tv shelves in the kitchen.  Well, grandma had just finished telling me that she doesn't dust, which I had all ready noticed the accumulation in the mugs:-)  Not soon enough.....Sya had just handed a mug to Sam who has to inspect everything - what does he do?  He BLOWS it out - yep - in his face & eyes!!!  That was fun for about ten minutes.  Luckily I had contact drops to help soothe......

Saga #3:  Tuesday we went to pick up Nasya and Sam had to go to the bathroom.  I could tell it was urgent so we hurried and went into the adult restroom and I knew what was about to happen.  I could smell it.  Someone had just come out of there and it now smelled of  'VERY upset stomach & stinky deodorizer' - YUCK for us normal folks:-)  Sam walked in and came running back out - dry heaving in the hallway - I was sweating - hoping he was not going to puke!!!  Whew - we made it to the other side of the building where he could attempt to go - then the problem was two other boys in there and he was telling them to stop looking at him.  He eventually went.

Saga #4:  Wednesday Sam came home with his 'spare' pre-school clothes on - that happens frequently.  He started out the morning NOT wanting to go to preschool (actually this started the day before) as they told him that they were going to try new soup on that day.  Sometimes prepping Aspergians is NOT a good thing!!!!!  So - he tried a bite of new stuff and puked it up.  I am always doing laundry.

We have had some great mornings - he is often waking now and able to come out of his room without yelling for us!!  It is wonderful when that happens!  Would be great if this were the start of something and not just a cycle - we shall see:-)

Tuesday, April 19, 2011

WOW! Conference, Amazing People, and Silly Sayings

Okay - John Deere Green again.  It's been a month - but I've thought about writing everyday - am tired so will probably forget something but I guess I can always add it:-) 

First - this past weekend I was taking a drink of lemon water out of a 64 oz. jug type thing from out of the fridge - the rest of the family was sitting at the table and I hear "Woa - don't drink out of that you hippie!" - Yep - Samuel!  We all died laughing!!  I said - "WHAT - where did you hear that???"  The old man in "Up" I guess......go figure! 

Just when we were thinking he was doing soooo great at pretend-play/imagination - he throws me for a loop.  We had the neighbor kids over - the boy is a little older than Sam and the girl is a little older than Nasya.  Perfect!  We were downstairs and the neighbor kids were pretending that Sam's tool bench was an ice cream stand - Sam freaked!!  If I had not been right there - he would have for sure yelled in their faces again and again that it's NOT an ice cream stand IT'S a TOOL BENCH!!!  And he might have even pushed them away or gotten aggressive with the situation.  Today he said that Petey (our cat) could not be a princess....(Let me explain....Sya had a princess wand and she was going around tapping us and making us a princess) Well - Petey could not be a princess because he did not have a crown 'silly'; and Sam got VERY angry when Sya tried to make him a princess....I suppose most big brothers would not like that:-)

I went to an Autism Spectrum Disorder Convention a couple weeks ago - yes two nights of uninterrupted sleep in a quiet hotel room (hmmm, something my hubby gets quite often and needs to appreciate it:-)) - but for some reason I was completely exhausted when I got home!!   Probably because we went non-stop the whole time we were there!!!  7:30AM until 8:45pm - LONG days!  So - the first day starts off with a nationally known 'Social Skills' speaker/therapist and we are in the front seats (not by choice - that's all that was left:-))  She was talking about how 'neurotypical' people think about how other's think about them.  Read it again - it makes sense and is something that Asperger's people REALLY struggle with!!  Anyway - there are 800+ people at this conference - and as she is explaining this she steps down off the stage and quickly walks directly in front of - WHO???  ME!  She proceeds to talk to everyone about what everyone is thinking - "What is she doing?" Where is she going?"  "How do I look?" etc.  Then she says, "There is ONE person in this room who is REALLY panicking right now!!" - yep - ME!  She proceeds to walk back to the stage and as my heart is pounding - I decide to check my phone for a possible text from my hubby saying "Good Morning Lover" or something like that.......Which brings me to Amazing People....

My text actually read:  "Jason got Samuel an iPad!"  I was in total shock - and I started getting teary-eyed.  Suddenly I didn't hear a thing this fantastic speaker was saying - and was trying to figure out how to fit in the session about iPads!  There were 4 different sessions I wanted to go to during that time - but I made a bee-line for the iPad!  I was staring at the people who had one to see what they had on theirs - It was helpful somewhat - I did get a great handout that had top education Apps.....we are still finding out it's potential and I am sure we will be for quite some time. 

I do wish we could have held on to the iPad before introducing it to Sam - we needed/need to come up with a 'routine' or more of a structured plan - we will have to backtrack - right now he thinks its' primary use is for 'incentive' for him to play games.  I knew this would be an issue - For example:  he knows he gets iPad time in the afternoon when Sya is sleeping - he gets 20 minutes as long as he has not been naughty.  He loses 2 minutes for bad words; not sharing; 5 minutes for hitting/pinching; etc.  He can also earn them back - or earn extra if he has been exceptionally good!!  HOWEVER - there is a much bigger picture here - I have slowly started to prep him for this - The primary purpose of us wanting an iPad was  - using Apps that teach social skills - sharing, not getting in peoples faces, not hitting, lowering his voice, how to go places, turn taking, picture schedules, etc.  I found a free App where you can choose - "How To Go To a Grocery Store"  "How to Go to the Doctor"  "How to Behave Getting a Haircut" etc.  Things we all take for granted - but Sam struggles with big time!   He is VERY possessive and when he thinks something is HIS - no one else can touch it - he will hoard/hide/and guard like crazy.  So - we now are working on that aspect.....will keep you posted. 

Nasya - she is getting sooooo big!!   Now we hear her saying sassy things like - "Cool _____"  "Wait a second!"  "Mmmm, delitious!"  "I all better now" (just so she can go outside or bye bye) and she has decided on "Sammy" as her name for her brother:-)  I didn't think he'd go for that - but he said it was fine:-)  There is more to tell - but I have nothing left at the moment - going to bed......

Friday, March 18, 2011

Make Believe & Koko Pea

Well, as I mulled over what to call this posting (and what to focus on since I've been wating to write for over a week now!!!) I decided to focus on Sam and his creativity.  In the beginning of our search for an answer to our issues with Sam - through testing we found that he did not 'pretend' NEAR as much as a child his age should - I knew there were possible issues - but the tests really hit home.  He would not pretend to put a cow in a toy bathtub - because cows do NOT take  baths!!!!  That is just one example.  Now - he is willing to do silly things - MOST of the time. Sometimes the literal side kicks in  - but for the most part - he does a great job of really using his imagination:-) 

Looked up Apps for the iPad 2 - (I say 2 because of the camera capabilities - we would/could use this to create his picture schedules - we could take a pic of his OT in Hastings for example instead of using a generic pencil drawing of a 'friend' that I use now for any person .....the more specific the better...etc.)  There are apps for labeling emotions; there is one that really excited me - as I think it would help him to talk to us about his day at pre-school.  Right now he just gets angry and frustrated and does not want to talk about it - but the app I found would encourage him to interact on the iPad and tell about his activities.......I digress.

Last Friday - March 11 - Koko went to heaven and I also had to take Sam to the Dr. - within a two hour time period.  HORRIBLE day - besides the obvious and a horrible headache - Sam was coughing terribly.  By the time he saw the Dr. he had a temperature and was in bad shape.  He has been sick for a week - no temp now but very bad cough and very irritable.  He does not do well when he is not 100% - it seems to be magnified with him as with everything else:-)  He has been very physical with his sister - one moment he is approaching her and wanting a hug (she turns away because she thinks he is going to hit/pinch her or yell in her face - so then he gets mad because she is turning away and he doesn't understand why.....) then in the next minute his is yelling in her face and shoving her to the ground.  It is awful to witness and my heart aches for her sometimes!!  She is tough one - yes she cries and yes she eggs some of it on - she knows what toys to touch to make him mad - and it works but much of the time she has done nothing to bring this on. 

K - I've written enough.  Wait.......we have an 'IEP' meeting - not sure what to think.  Then we have the meeting with the school that he could be attending next year in late April.  Don thinks he'll do well in Kindergarten if we send him all ready - I do not know what to do at this point.  Guidance is needed.  We shall see how this unfolds....TBD.     

Saturday, March 5, 2011

YAY! Very Intense Week.....

Ugh, have been trying to blog all week.   WOW - YAY my husband and I went to a meeting last Monday that consisted of Asperger's parents only - it was AWESOME!!!  The fact that we could share stories, understand, not have to justify or defend and laugh was great.  There were 7 or 8 of us and all the others had a child between the ages 11-30.  So- we had 'experts' to ask our many questions and get advice on some of our issues.  I am sooooo grateful to have made priceless contacts - I all ready have a list of names and numbers to call regarding therapists that might help us get a handle on Sam's anger/'violent' tendencies.  Now we will all be meeting the second Sunday of the month.....YAY!

Then, I had the pleasure of meeting with our pastor's wife Wednesday.  Pretty intense and great.  It took us 6 years to have Samuel (as I stated in earlier blogs) and she was one of a few that were praying for a child for us.  When we met this last week, she asked 'is he a 'destiny' child' - woa!  Hadn't put it that way before - I do believe in healing and I am also believing for God to give my husband and I the tools to handle Sam.  

STICKER CHART:  well, the sticker chart is not a fantastic incentive for Sam unless he knows I have 'cheap' toys in the closet for him when he gets on a 'circle'.  Hot Wheels, Dollar Tree thingys, Backugans (sp?), candy, etc.  Twice in the last week he has said he does not want his sticker chart anymore - 'THROW IT AWAY!!!!'  We had a mega meltdown Wednesday all afternoon - he wanated the two Hot Wheels that he knew were in the closet - he counted how many stickers he would have to get before getting them - 7.  He was overwhelmed by all the 'chores' he would have to do to get the stickers (these 'chores' are hardly tiring - but to him they are!!) and flew into meltdown mode.  I couldn't take it anymore after 45 minutes - not only was he in a fit, Nasya was bawling and in the middle of it and I was TIRED - so I set them out and crossed off the circles.  It was an 'advance' as far as I was concerned - and that is what I told him.  The next several stickers he received I just barely mentioned them to him and did not make a big deal about it until we got close to the next circle.   He's so stinkin smart - he always figures a way around our methods/incentives/etc.  It's not a good thing.

Those of you that have known me for a while know that I've dealt with headaches all my life.  Some days are tolerable and some are unbearable.  I have gone to many doctors over time and get the same lazy answer - tension.  They are in the back of my head/neck area and I have just been told take ibuprofen and learn to relax.  GRRRRRRRR - yes I've had stress in my life - esp. the last 5 years - but what was I stressed about when I was in elementary school????  I bit the bullet and went to a neurologist Thursday.  They looked at my MRI from 2003 and think they have the answer.  I have a funky bone behind my left ear - that has muscles/nerves attached to it - because it is bumped out it is pulling on those muscles and nerves - to make things worse I have whiplash from 26 years ago - my neck bone is straight.  They are working against eachother - makes sense.  SO - due to all the ibuprofen, Excedrine Tension/Migraine, and Fiorinol (sp?) I have taken I also get rebound headaches - therefore - I am in 'detox' this week and quitting cold turkey - UGH!!!  Today - Saturday is my first day with no drugs.  They have given me something else that will teach the muscles/nerves to chemically relax and hopefully this will all be the answer.  I honestly cannot imagine a day without dull pain and/or horrible pain - and I really cannot imagine a day without ibuprofen!!!!  I am excited to hopefully have the answer I have been needing!

Saturday, February 26, 2011

The Previous Blog Title.....

Truly - he loves you so much it hurts - literally - he is not gentle by nature.  Watch out - he'll come running at you and squeeze you soooo hard - sometimes it does hurt.  I have to be careful not to show any unhappiness with his 'love' in that way or he will lose it.  So - I just tell him how much I love him and lets try that again only more gentle!!  He could literally knock some of you over if you get the pleasure of him showing you his BIG love for you!!  You will not forget it - it is truly from the bottom of his heart!!

Some still need to learn to love him for who he is and not label him and not ignore him or how he is.  It really hurts as his mother to see friends/family not embrace him for the amazing boy he is.  If you have a tough time - imagine your child (if you have one:-)) dealing with the same issues - put yourself in our shoes - REALLY close your eyes and put yourself in our shoes and imagine people NOT interacting or NOT wanting to interact with him/her - it's a lonely sad feeling........mental exercise for the week.......

Asperger's kids/people are known for their open hearts - good or bad - Sam is definitely no exception.  I have never met someone with so much love to give.....that is when he is not struggling.

Friday, February 25, 2011

I love you so much - it hurts!!!!

Wow.  This Tuesday night was horrible.  Don was gone - I was exhausted - Sam did not want to go to sleep - there is no human being or rocking chair that can go fast enough for him!!!!!!!  Sya did not take a good nap at all that day so she was beyond tired and Sam was fighting me with everything.  So - from 7:30-9:20 was absolutely awful!  It's a good thing I had all ready gone out to the dog and threw the ball several times to get out some anger/frustration and waited a couple hours before typing -- I was not in a good frame of mind and would have probably said things I would have regretted......So - the kids are finally in bed after almost 2 hours of tantrums and poor Sya waiting to go to bed.  I was finally able to go to bed at midnight (after another waking), oh, and then I got to go to bed again at 4AM after dealing with another awful waking from 1:30-4 - seriously.  Sam woke - wanting 3 different things to drink, then I wasn't making them fast enough; then he wanted to rock and of course - you guessed it - it wasn't FAST ENOUGH!!!  Then because it wasn't fast enough - he threw himself on the ground and was sooo out of sorts peed all over - again.  So - now while he's melting down - I am cleaning him up and leaving the floor/clothes until I can get him back in to bed.  At 3:45 - he is finally willing to lay in his floor bed - IF I lay down next to him.  After a bit - I QUIETLY stand - walk out and wait at the door - just in case he notices and starts yelling.  Sure enough - so I go back and lay down.  By the time I look at my alarm I believe it was 4:15.  Then - it's 6:40 time to wake him for pre-school - and Sya joins us. 

It is now Thursday - the evening was better -other than his name calling, yelling, and fits are getting much more often.  It is REALLY wearing me down.  I didn't get a shower due to Sya crying off and on from 10:30-midnight - I finally just slipped into bed after rocking her and hoped for the best.  She woke again a couple times and again at 6AM.  OH NO you don't - back to bed after a little hot cocoa - her obsession right now - other than Buzz.  Back to bed she goes - Sam wakes at 6:55 - good freakin morning - for real!  It was AWFUL to say the least - trying to rock fast enough - thrashing, yelling, calling me several names, hitting me ( I am soooo grateful he does not know any cuss words and I hope to keep it that way!!).  All the while - I'm beyond tired once again - and TRYING to muster up enough positive energy to deter my anger - I'm not having much success - I continue to try.  After getting angry at me for not making his choc. drink fast enough; after walking 'in front' of him to go to the bathroom - he is so angry that he just stops in the kitchen and yells at me "I'm just going to pee in my pants" - he rarely lies.  Now - he is yelling that he doesn't want to be clean  - in other words he doesn't want me to clean him up.  I get his clothes off - put a towel over the puddle and attempt to calm him - after another 10 min or so - he just decides to be upset at me because I'm not smiling.....WHAT~!!!  So I mustered up a fake smile - and unfortunately he cannot tell the difference.  I guess fortunately - for now.   He calms and tells me I'm his princess and he wants to put his pants on.  His 'niceness' lasted maybe 10 minutes - only to turn into name calling; naughty words - shut up; shut it' stupid mommy; idiot; moron; I hate you; etc. etc.  So hard to ignore this - I am going to exhaust myself and go back to time outs and not sure what else.  Well - gotta go pick him up from therapy and hope for the best.
Ipad - in a previous blog i mentioned wanting an ipad to help with Sam - it's not a luxury - there are literally hundreds of Apps that are specifically for Autistic/Asperger's kids.  Not exactly something you can do with a computer.....and take anywhere!!  Would hopefully be a HUGE tool in getting him to cooperate - without having to use a whiteboard and marker/eraser all the time! 

Tuesday, February 22, 2011

CanYou Believe It!!!!????? Comment All Ready!

Seriously - two blogs in one day let alone as many as I've  written in the last two weeks!!!  Just decided I have to......this should make up for the lost time:-)

So - in addition to my last blog - I have to say I'm batting Zero for three calls so far.  He'd either need Medicaid or my next step is to see if he qualifies for SSI - don't know much about it but need to call them now.  We can't get services from another facility unless he qualifies for that.....and so on.   

PLUS we just spent $400 on my Koko Pea siamese sweetheart kitty to find out she has aggressive cancer and could live 2 wks or 2 yrs.  And - our underground pipes are old enough that they clog regularly and we have to have a plumber out every so often when we start smelling 'eew' in the kitchen sink - well, that time has arrived - so YET another bill coming our way.  I know that's life and yes, it does seem when it rains it pours.  But - the ASD bills will keep coming unless or until God intervenes:-)

On a good note - the wonderful support group here in town is paying for my ASD conference and for part of my hotel - YaY that helps tremendously - now I just need a miracle and someone wonderful to come by and watch our kids while I am away - that is now the issue - a BIG issue as I cannot leave them home alone - I just don't trust them to get the dog fed!!  HAHAHA!  Joking......

Would someone please take the time to 'comment' - I messed around with the settings so people could comment freely and not have others see it unless I post it - no one has commented since I've done this or I simply am not getting them - THANKS!!!!!

Money, Money, Money, Money, Money, Money, Money

Good morning.  Well - first off let me say that everything that I apply for or attempt to apply for regarding financial assistance or ipads or whatever for Samuel and Asperger's - we never qualify due to income - we do not fit in the 'low-income' bracket.  However, we have a very high deductible and everything is out-of-pocket - also because many therapies are not covered.  So, by the time we pay the thousands of dollars it takes for therapies and sensory items and social stories and tools needed to help with behaviors - we probably fit in the 'low-income' bracket - so I guess it all evens out - HUH???? 

I am about to get on the phone and make several phone calls to GET HELP.  We shall see what happens - these are the things we are needing and could use some assitance - we are NOT one's to ask for hand-outs - but as you read everywhere - having an autistic kid - is VERY costly!!!  We are needing/looking into the following:

*Need respite!!!  $$?

*OT - more intensive - cost is anywhere from $60-175/hour

*Neurofeedback - cost is the same as above for one session

*a rocking chair KID size - with the specifications we need it would be $400 - he needs one that he can rock big and fast in - needs to be basically like an adult rocker with a sturdy base

*ipad - this is often used with autistic kids due to their VERY visual learning - Sam definitely responds to visual cues - much of the time; this has been used with him at pre-school and with a relative who is used to working with these kids $$???

*Dr. Amen Clinic or something similar - these clinics specialize in studying their brain and where exactly the deficits are and how they can specifically help the individual - this cost is $3000+++ just for the appointments in addition to travel expenses - we'd have to go to California or Washington.

*other needs:  sensory items such as weighted blankets; continual social stories related to problem issues we are having, therapist recommended daycare for his sister who goes to mornings a week - so she can learn to interact with socially 'normal' kids PLUS I get a few hours to get stuff done and breathe!!!  $$$???

So - I have been stressed lately regarding finances - what we need to do for Sam and how we are going to get this done.  I guess all I can say is pray and I do know God is in control but it is easy to lose that focus - with what little sleep I get and how stressful my days can be - I sometimes just feel defeated. 

Go to bed tonight - 12:30am by the time both kids have woken - and one of them has thrown things at you, peed his pants during the fit - then finally decided to rock - set your alarm for two hours later - go back to bed after 15 min - set your alarm for 1 1/2 hours later - do the same and wake in the morning about 6:45am - start your day HAPPILY and immediately ready to serve kids and deal with a kicking fit because you are not rocking fast enough - it is now 7:15am and the child is not dressed and the bus will be here in 15 min - good luck:-)!    I bid you adieu........

FYI - the above scenario is an average night - a BAD night would be much longer times spent with Sam in a fit/meltdown and there is NOTHING you can do and/or getting up much more often.......

Sunday, February 20, 2011

This is a First

I'm actually writing this towards the end of an episode - and the only way I can do this is because my teammate is here rocking Sam like crazy - with no underwear on - SAM has no underwear on that is....
He woke up out of sorts (he will wake and yell for one of us and we can tell he doesn't know what he's doing) Don went to go get him - asked him if he needed to go to the bathroom - he said no.  After rocking a bit - daddy went to put him to bed in his floor bed - BIG MISTAKE - little did daddy know Sam wanted to sleep in his hammock - which is where he was to begin with.  All heck broke loose.....we can tell when he is in a fit and needs to go to the bathroom - this does not usually turn out great.  Low and behold he peed all over the bathroom floor yelling and screaming and running out to the living room  - I went in to clean only to hear Sam yelling for me.  I go to the living room - and there he is refusing to put on underwear.  He is behind the couch (where ammo, I mean toys are) yelling for us to shut-up; morons; idiots; shut it; etc. etc. 

He wanted me to rock him - I told him if he put his underwear on I would gladly rock him.  The yelling continues, the name calling continues, the throwing continues......Don holds him down and tells me to put his uw on - I told him it is a waste of time as he will rip them off anyway.  YEP - that's what happened.  The battle continues - I tell Don to be CALM and not yell/tell him to 'stop it!'  I just sat on the floor with a drawing of underwear = rocking.  In a nutshell - Don is now rocking him w/o underwear and he is bawling and hardly able to breathe and saying he is so tired (I'm now crying because I can't help but think all this is because of when he was born he could not keep up his oxygen on his own - the Dr. took him away from the nurses so I could hold my newborn and they yelled at him saying he couldn't keep up the O2 - those few short moments as his mother held him may have been crucial.......)  Anyway - we can't look back - we can only help Sam and pray. 

Sam has just stood up and crying - asked why daddy didn't put his underwear on him in the first place - the underwear are now on........they are rocking again. 

Earlier this evening - Sam was upset - at what, I forget.  I just know that I was in my chair - Don was in his chair and Sam on my lap - I was not letting him have his way and in the midst of all his yelling he calls me a 'Drama Queen' - I look over to see Don laughing.....good night - my turn to rock......

Friday, February 18, 2011

Spitting Mad!!!

Wow - all I can say is I'm glad it's Friday, I'm glad daddy's home, I'm glad Sam is sleeping:-)  It has been a very very difficult week.  Soooooo incredibly negative.....soooo incredibly explosive.......such negative words that hurt and take a toll on us........and now we add during his meltdowns/yelling/hitting/throwing and spitting - and spitting and more spitting.  GREAT!!!  More on that later....

Wednesday, Sam got off the bus and was ok until we got to the front step and he once again asked for a Happy Meal - I said no as usual and the feud began.  Thrashing/angry yelling, refusing to go in, yellling for me to talk to him and of course I cannot because he is yelling nonstop.....I finally physically picked him up and forced him in the house (meanwhile Sya is crying in the bay window) - I put him down on the floor and went into the kitchen to get something, come back out (15 sec. later!) and he is out the door and half way down the street.  So - now I have a crying confused two year old and an angry frustrated boy running down the street.  I take off out the door - (hoping to God the keys are in my pocket since Sya is notorious for locking us out during these times) and trying to catch up with Sam.  I do and carry him back to the front steps - he yells/screams to talk on the steps NOT in the house - so I crunch down to his level and let him calm down.  Again - the Happy Meal......ugh - I tell him if he gets a smiley face in Pre-school 'tomorrow' we will get one after we pick up Sya.  GRRRRR we have to stop this - so we don't keep going through such fits. 

Yesterday - we went out to the farm - the day was awful/headache inducing - until we got to grandma's.  We had a good time - for the most part.  Sam was getting frustrated thinking grandma was ingnoring him when really - her hearing if really getting bad!!  I tried to explain that to him - to no avail.  I just translated everything and it worked much of the time.  Grandma just kept talking about this and that and at the same time Sam is yelling for this and that.  Argh - Calgon take me away!!!!!!!

So - on the way home - Sam was being naughty to Nasya.  She was a bit crabby and Sm did not want her making any noise.  I witnessed him pinch/grab her harm very had and of course she cried.  I told him I was going to take a car away when we got home - EXPLOSION!!!!!  I swear he kicked a hole in the back of my calling; kicking kicking kicking; yelling - "NO NO NO don't take my cars away - say it - you won't take my cars away??" over and over and over and over - ALLLLLL the way home - had a few things thrown at me luckily he missed. 

Wits end to say the least - no matter what we try - it ends up in a meltdown.  If we draw out an immediate schedule - ie:  "first eat supper, then take a bath, then read the book he wants" he'll have a fit because he wants it in a different order or he wanted to draw the pictures or whatever!!!!!!  Anyway - I'm tired of writing about all this - so I'll finish up.....

Went to Kearney to a workshop today - came home (mom watched Sam today for the first time) came home and right out of the gate - MELTDOWN city because once again - I said NO to a Happy Meal.  Occurred under the kitched table - and piles of SPIT everywhere - I sat in the living room on the floor looking at my white board with pics of 1)Calm/quiet 2)NO spitting 3)then we'd talk.  He refused to look at the board.......after about 20 min THANK GOD daddy came home to break it all up  - with that, I'm signing off - good night and hopefully on to a GREAT tantrum-free weekend - PlEASE!!!!!!!!!!!!!

Tuesday, February 15, 2011

"Let's Practice That!"

So - yesterday during his rant/fit/tantrum after coming home from school - Sam uses our own 'ways' against me.  He was calling names left and right and I was of course telling him to stop using those words; telling them how they make me feel; nicely grabbing his arm to get his attention......and in the midst of this he looks at me and yells for me to stop touching him when he says bad words and stop telling him to say those words and then he says......"Now lets practice that - (he looks right in my eyes and says very deliberately) MORON".......I stood there in complete disbelief at what I was witnessing.  Actually quite speechless but I had to pull it together very quickly.  AS THE PARENT - I told him to stop using the words, pointed at him and told him I will not talk to him until he decided to use calm, nice words.   He yells at me again that I was not 'practicing' what he wanted me to do .....ugh.  Just thought you might find this amusing.......

Today - he was complaining that he could not get some pieces out of a game he was puting together so I told him I would help.  He hands it to me, leans back and says "knock yourself out!"  WHAT???  Well- he got this phrase from "Astro Boy" - it just always amazes me how appropriately he knows how to use such phrases. 

A small meltdown in the bath - daddy decided to dump the water on his head quickly to get the shampoo off without waiting for Sam to cover his face and that was a BIG mistake.  Sam has to have his face covered or he freaks - just like tonight.  He actually started bawling and had to be calmed down. 

Lately he is obsessed with getting kids meals - we neeeeeed to nip this problem NOW!  He only wants the toys and the obsession is getting all of the ones in the 'collection' - on top of this just simply being a bad habit - he does NOT eat the meat.  He has been asking questions about specifics on where the meat comes from, etc.  I told him he had to eat one chicken nugget or he wouldn't get any more meals - I watched him attempt this and he would only eat the edges of the breading - he told me he wouldn't eat the chicken.  He simply can't do it.  Not sure what the future of food holds for this little man.  Time for mommy to go to bed - I'm TIRED!!!!!!!

Monday, February 14, 2011

The Perfect Storm

Yes - if you've seen the movie, 'The Perfect Storm' is not a good thing.  Last week Sam and I had one of those days:-(  I am not proud to say.  We had all been sick, very tired, some female things got in the way (grrrrr) and we had a bit of an explosive day.  I cried, he cried, I said I was sorry, he said he was sorry and that I was his princess mommy - he says that a lot.  I won't go into detail much more now for more recent news since I'm too tired to remember details.....

Today - we had a brief version of the above mentioned.  He returned to school after having not been there for a while as mentioned in yesterday's blog.  I was expecting a very happy Sam when he got off the bus - NOPE!  Lyla - the driver, looked at me and said......don't talk to him today!  I knew what that meant - it was one of those days where he covers his ears (as he did before he left this morning) and says "I wish everybody would just shut their mouths and stop talking!"  Or some blunt version of that.  He NEVER wants to answer questions about school especially right after he gets home.  So - I give him his space and kind of feel out his mood. 

When the bus arrived - I was in the middle of finishing up belated Valentines to get out to the mailbox - so I had a nice mess on the counter.  I ask him if I can make him a we go.  I have not figured out he is in a demanding, short-fused mood!!  This is not good.  He demands Orange Juice and orange crackers.  The demanding/yelling does not stop - typical.  There are just some days where we do not push the 'when you are calm' or 'ask the question nicely' - I knew that if I did this - it would get violent.  It was all I could do to keep him contained while I went to the cupboard and to the fridge.  He NEVER understands that these things take time - I cannot just snap my fingers and there it is.  YES typical kid - but NOT typical reactions as we see with him - the yelling continues.  I get the 'goods' to him and he demands to rock (VERY prominent again the last month or two!! and again NEVER fast enough!!!) I tell him I really have to go to the bathroom (I had to go to the bathroom since before the bus came but I didn't want the bus to be waiting on me) and then I'll rock him.  You know where this is going.....

He's on the kitchen floor yelling, hitting, calling me all kinds of names (moron mommy; idiot; I hate your heart; etc.) yes these things hurt and these times are difficult but I have to tell myself it will subside.  He then goes to the living room and is banging the easel against the wall; comes back into the kitchen and starts grabbing my cards/boxes and throwing them....It's so difficult maintaining my composure and not festering with anger, especially when I am lacking so much sleep and not feeling the greatest.  After about ten minutes of dealing and trying to calm him - he finally went into the living room and sat in the recliner and waited - I FINALLY got to 'go'!!!!!  By the time I came out - he was calm and in his beanbag chair watching a new pirate cartoon - he was not the lovey angel he can be.  Wanting hugs, kisses, telling me he loves me.  I still do not understand and probably never will - his sincerity in saying these things is so warming - it almost makes up for what we have to live with. 

On a good note - God gave Sam the perfect sister!  When I am home alone and trying to get them both to bed - I rock both of them knowing Sam will fall asleep first.  When he does - Sya knows I'll ask her to go sit on her beanbag and wait for mommy to put Sam to bed.  She willingly does - and waits so sweetly and patiently.  She is a super sister - he adores her:-)

Sunday, February 13, 2011

Still Going.......

Simply because it is almost Valentine's Day - red.  WOW it's been a while - believe me I think of this BLOG everyday and what I would/could write if I only had the luxury of TIME.  SOOOOO much to tell - but won't get it all out tonight.  Just a quick update and vent:-)

Well, REALLY wanted to go to church this morning and low and guessed it - NO sleep!!!!!  Our family has been struggling with the flu/sinus infection the last two weeks.   Sam has not been to pre-school for a week and a half - granted there was a two day break in there but it has been a long time for him - and he is actually missing his friends.  That said - I sure hope tomorrow AM is EASY going for him to get dressed and on the bus - after struggling to get him to want to stop rocking FASTER FASTER FASTER that is....YES we are still dealing with that issue! 

Same issues - different day.   I have found a couple rocking chairs that would be perfect for him. (hoping he would take to it without our holding him tight as we do the rocking!!  We might have to get rid of our chairs!)  Anyway - they are close to $400 after shipping and all - YIKES!!!  But - thats what we can expect since we need a truly legit rocker that he can rock FAST and not slip and slide everywhere - it's going to have to be just like an adult chair with a strong base but his size.  Guess we'll have to start saving.........

Had conferences......went ok.  I inquired why he was getting more 'sad' faces than usual - meaing he had to go to 'thinking time' during school.  Well - it's a good and bad thing - he is actually wanting to socialize and interact much more - therefore he is struggling with HOW to to handle situations.  For example - a friend wasn't giving Sam what he wanted so he grabbed his arm really hard and made his 'angry' sound.....well he had to go 'think' about what he did.  So - it's ok if we see a few more sad faces as long as they are helping him to make the better choices.  They are really pushing for him to go to Kindergarten next year - he turns 5 October 9th.........academically, yep he's ready; socially - not sure how that will go - we have no problem with him taking Kinder. twice.  His OT in Hastings says it might take that first year to get him used to the school 'ways' and then the next year to function properly.  I am going to a school this week or next and observing - the teacher and the K ways.  

K - so YAY I've blogged for those of you missing it - and for myself mostly:-)  Oh do I have some stories to tell.........more later and I sure hope it won't much later.......