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.......