Christmas Eve Fun NOT!

So the manic behaviors noted today!
1. over exaggerated movements.
2. impulsive
3. clapping
4. being destructive (puzzle that was half finished)
5. obsessive
Welcome to Christmas (and it's only Christmas Eve)!  God let my yellow pill kick in before I want to cancel all holidays until further notice!

                                                                                
                                                                 My Christmas Spirit!

Blood Level Update

So it looks like every time we find a med that works for JD's brain his body decides that it doesn't like it and starts to do weird wacky things.When he was on Risp he ended up with TD within 3 months of taking it (best three months in a while) now that the Lith/Dep/Sero/Clon coctail is working his thyroid decided it did not like the meds.  So as of right now we are staying in the combo with the hope that the thyroid will not show any signs of decreased ability to work properly. 
So the blood results of 12/16
Lith 1.02 (fasting)
Dep 140 (fasting)
Thyroid TSH 14 down from 29

What does "Stable" look like?

I have been saying all week JD isn't stable.  But you know what I think he is.  I am remembering back to March when I was talking to his new pdoc at the RTC and he said when we get JD stable he will "look" Autistic.  And low and behold that is what he has "looked" like this week. Examples that come to mind from over the last week.
1. Singing Christmas Songs at the top of his lungs at the park and never noticing that everyone near him had to get up and move because it was annoying! (kinda like Buddy the Elf in the movie Elf)
2. Or not understanding why my friend who is chasing 2 three year olds around the park could not stop everything and sing with him!
3. Doing his puzzle none stop.
4. Licking his pants at the doctor's office.  (at least it was his and not someone elses')
5. Asking for little kid stuff for Christmas.

Part two of this post:

Lab Levels From Hell
as of yesterday 12/6
Lith 1.45 (.6-1.2)
Dep 142  (70-120)
TSH 10.7 (.40-6)
Levels on 11/20 (no med changes)
Lith 1.0
Dep 103
TSH 29.9
What the heck is going on with this poor kids blood levels?

Scary Stairway to Heaven, Hell or Purgatory?

First off he is out of the hospital.  (10 days) Did anything improve while there?  I don't think so but I hope so.  Med change was more of a lateral move.  Discontinued Ten*ex went back to Clon*dine. 
So as of now the meds are:
Seroq 100, 100, 400
Lith 300, 300
Dep 500, 500
Cloni .1, .1, .1
Lith level was 1.0 and Dep level was 103
So I feel like I'm standing on a dark staircase.  I do not know which way the stairway is going is it up is it down is it sideways or am I stuck on one step.  I guess only time will tell and I will just keep on keeping on for the whole family.

The Vampires have attacked!

Thank goodness JD is very good about getting blood drawn.  They are testing the lith levels daily at this point.  When he went in it was 1.5  down from (2.2) then, .7 then 1.0.  I have no idea why it is going up and down like that but that might explain why his mood is going up and down!  I'm no doctor but that would be a fair guess I think.  Also the Dep level is off.  It usually is around the 120-122 level and it is down to the 103 level.  So as of today he is still in the psy hospital.  Which means we might not be a complete family for Thanksgiving but after the Thanksgiving from HELL last year i'm not sure any of us would be upset not being together. 

Is my best good enough?

I'm feeling like a big failure when it comes to raising JD.  I think I've tried my best,  but have I?  Should I try this, or that or something new?  Is it more meds he needs or more structure or more attention?  I don't know the answer and it is driving me batty.  The poor kid is dependent upon ME to find him the right doctor the right therapy so that he can live in our family. But does the right med, doctor or therapy really exist for him?  I don't know.  Where's my magic 8 ball when I need it?  As of right now the doctor has done nothing at the psy hospital except draw dep and lith levels (neither of which the nurse could tell me the results of) so now all I can do is wait to here from the doctor tomorrow during the "team meeting". 

6th hospital stay in 14 months :(

Time line:
Sept 10  7 days SC
Dec 10  10 days CC
March 11 10 days CC
March -June 11 RTC
July 7 days SC
October 12 days LR
November ?  CC

Yesterday just went from bad to worse.  It all started at 9:45 am and ended when I checked him into the psy hospital at 2:30 pm.  He was rapid cycle raging meaning he would rage it would end and 15 minutes later the whole process would start again.  But honestly I do not think he was "stable" when he came home from LR last month.  We usually get a good three months not one?  I'm so tired of trying to figure out how to help him when a huge part of the problem is the meds.  Almost makes me want to have them put him on a med "holiday" and start fresh again. I feel like we do not know what base line JD looks like anymore.  But a med holiday is scary scary scary!
On the plus side I was able to drive him there myself and skip the whole ambulance ride to the ER thing this time.  I am so thankful that I have a sitter that will come the minute I call her if she isn't at her other job. 

Screw you LIth*ium and the Horse you rode in on!

The awful gameroom how dare I....

Shitty weekend and it's only 9:46 am on Saturday!  Might want to stop reading now if you are in a Susie F'n Sunshine mood and think you can cure the world!   It all started yesterday afternoon.  I got to the sitter's right at 3:30 after a productive day of Christmas shopping and Grocery Shopping.  The sitter meets me at the door with "JD is in a MOOD"  He's been smiling and ODD all day long!  I was like "thanks for ruining my day"  She was like well you know I had to warn you!  True she did have to warn me that he was off his rocker.  But now days when isn't he off his rocker?  So by the time we got home at 4 he had already decided that it was going to continue ODD HELL.  While the other kids and I were putting away groceries I sent him to the game room to play!  You would have thought I sent him off into some deep dark cave to play with a bear!  Not to the awesome game room with a million dollar worth of toys to play with!  So rage #1 of the evening started finally ended in a hold at 5:15 by 5:30 he was on to rage # 2 which ended in a hold then he was on to rage # 3 at5 5:45 which luckily did not end in a hold I think he had finally exhausted himself.  I know I was exhausted!  I got one major bite which looks so lovely on my white girl skin!  So back to my Lith*ium rant.  JD's levels became toxic on 450mg BID levels were 2.2 a week later after 300mg BID  it was still in the toxic range at 1.5.  But he shows no signs of toxic he is however no why stable.  Anyway Screw you MEDS!!!!!! It is now 10:09 and I hear him yelling "My room is so BORING"  how dare I give my children nice rooms and toys what a mean mommy! 

The Real World!

Daddy Mojito and I have been trying to hire a sitter once a month to take care of the older three so that we can do things with the little three.  And vs versa (I took the big ones out last week)  Most times we do stuff that would be to hard for JD to handle today we just went to an event for preemies.  We had a great time.  I had planned it so we would only be gone during JD's quiet time so the sitter would only have Jose' and Tini to deal with.  But I should have known better.  JD knew we were leaving and had agreed that he would stay in his room and rest.  But who greats me at the top of the stairs manic as hell when I walk in!  JD!!!!!!  Who had been out 5 times to "go to the bathroom" the sitter said.  And who admitted that he did not try to rest he just played in his room.  This would not be a big deal if he did not need that down time everyday.  So instead of three hours of calm re-group time he had 3 hours to get as manic as he could.  So that makes coming home so much fun NOT!!!!!!!! 

when your home becomes your prison :(

family in need of protection~  That is what I would write if I had to fill out a form about our family.  We need emotional and physical protection from JD on a daily basis.  Today it was a broken closet door and screaming so much he scared his little sister.   I thought she was going to fall down the stairs trying to get away from him.  I ended up having to do a hold since he was trying to break his room light  (which he has done in the past).  All the time I was dealing with the raging JD everyone else had to stay downstairs so they would be safe.  How do other people make your home feel like a home when it is really an emotional war zone. The sad thing is this RAGE started because I told him to go play in his room!  Really?  WTF?  This med change and hormones raging isn't conducive to a harmonious family life.  Why does a 75 lb, 10 year old have this family held hostage?   Because of his brain damage!  Today I say FML!!!!!!

And the Ride Continues!

So the pdoc called yesterday afternoon with the Lith levels for JD and according to the lab his level is 2.2 which is almost twice as high as it should be.  (he was showing NO signs of toxic levels)  So we are having to go down from 450 bid to 300 bid.  When I went to get the new rx the pdoc said "buckle in for the ride".  Well that is the last thing I want to hear from him.  I HATE med changes.  Because with JD you never know what is going to set his whole little system into overload.  So we are going to try to stay in our bubble world for a few days and hope that we can do the med change without having to go into the hospital. 

Who's plugged in?



 So my best friend and I were talking today and we came up with a great analogy. We are like power cord power bars.  And each person in our family plugs into us to get what they need from us.  But the problem is the kids like JD who have such special needs that they need to be plugged into us all day everyday if we try to plug other people in at the same time the circuit over loads.  So JD is like the Dryer plug in you know the big one that zaps all the power.  So I know that the last few days I have not let JD "plug" in because my power bar was full of 5 other kids/ and a husband.  I just wish I could figure out how to up grade my energy resources so everyone could be plugged into mommy with out one plug zapping all the power/energy!

Is he 2 or is he 10?

"JD needs to go to the doctor" that is what the Three said yesterday when he raged for the second day in a row.  Really over this whole world revolving around ONE kid.  Why am I so upset?  Because the Baby was sick yesterday and I told JD I need for you to be calm and nice today while I deal with your sisters who do not feel well.  He must have thought I said be a little snot all day who cannot settle on one activity then throw a hell of a rage for an hour in the afternoon.   And do you want to know why he has raged two days in a row? Because I have been more than 5 feet away from him and trying to make him regulate by himself.  Why would I do such a thing.  Well once again let me remind you he is not my ONLY child.  Tuesday Jose needed me to take him to the doctor and yesterday the Three needed me.  So how do other people do it.  I feel like he is a perpetual 2 year old who thinks that he is the center of the universe and if he isn't then he will throw such a rage that he becomes the center of the universe because he demands to be.  And I know if I do not regulate myself he cannot regulate himself but dang sometimes I have to show emotions! 

Ambulance through the eyes of a three year old!

I was at the park with the Three this week (you know living the other life that I lead).  Anyway I was there with 2 of my best friends and all our "little" kids.  The park is close to a major road and along comes an ambulance with lights and sirens.  The other four little kids were like "cool an ambulance" but my Three stopped and looked then The Pink Lady one turned to me in her sweet little three year old voice and said "ambulance take JD to hospital".  I about lost it with the wave of sadness that I felt.  Tears came to my eyes thank god my friends turned away so I did not lose it.  I was able to pull myself together.  But I was really sad for my three little girls and the fact that the reality of their life is they know that their brother has to be taken away in an ambulance way to often.  Oh how I wish I could protect these innocent little babies more.  I do the best I can.  I try to have sitters come take them away from the house or upstairs when we are home and need to call in help.  But there are times like this summer when I was on the side of the road when a rage happened and it was just me and the kids so they had to see the ambulance. 

Shamu or You?

So yesterday I drove to the next city over to visit JD in the hospital.  The city he is in happens also to have a Sea*World there.  So as I was driving 1 1/2 hours for a 1 hour "Family Therapy" Session I had a strong urge to pass the hospital and drive onto Sea*World.  It's not that I love Shamu more than JD it's just that I wanted to go walk around a crowded place where no one knew me and pretend that all was right in the world you know pretend that I did not have a 10 year old son in the pshy hospital going on day 9.  Pretend that he had not been in 5 hospitals in 13 months and one RTC for 2 1/2 months.  And pretend that the world was one big happy amusement park with beautiful black and white killer whales.  Not the real world where my 10 year old during a rage says he wants to kill me.  But I do live in the real world and since I spent $90 on gas this week to take him to the hospital and visit the hospital and hopefully pick him up from the hospital I guess it best that I not spend $65 on a ticket to visit a park where not matter what I still have to come back to reality. So I exited at the right exit for the hospital.  I sat in my van until the absolute last minute talking to my friend trying to get my courage up to go into the hospital for "Family F'n Therapy"  and I put the smile on my face and went in and spent time with JD and his "therapist".  You might wonder what I have against therapy.  I have nothing against it.  It just isn't going to cure my son.  And during a rage no matter how many times he has said during therapy that he will be nice, not bite me, not try to kill me blah blah blah.  During a rage that is no where in his brain and if it is he cannot remember it because he isn't in his brain.  As I sat and talked with JD and his therapist he got a little "manic" and asked me for a hold.  Which is great if he does it early enough where just sitting and holding him like and infant helps him regulate himself.  So he asked and I did that and the whole time the "therapist" was talking on and on and on about how great that is.  How sweet that is how this how that.  When in my mind I'm screaming shut the F up I'm trying to calm my child and now isn't the time to chit chat with me. Now is the time for me to sit quietly and help him calm his breathing which then  can calm his mind.  After this all ended and he calmed down we finished talking and he went on back to his group.  And then the therapist really started in about how great that was, she never sees things like that blah blah blah.  And at this point I was like you know it isn't "therapy" that JD and I need it's the right meds that work more than 3 months.   So instead of Shamu I spent time with my boy doing our thing while we wait for the meds to hit the therapeutic level and we pray that they can last longer than 3 months this time.   

Vacation? Sad? Happy? Numb?

What are you supposed to feel when your son is on day 7 of his 5th hospital stay in 13 months?  Well in our family is seems to feel like a vacation.  A vacation from walking on egg shells, a vacation from rage, a vacation from fas, a vacation from MR, a vacation from structure, a vacation from accommodations.  And yes all that equals a vacation from JD.   And 13 months ago I would have felt like a worthless mother for admitting this but you know my other 5 kids deserve a break from all of the above. And damn it so do my husband and I.  So as we gear up for him to come home tomorrow we will keep our "vacation" time going so far we have played chase downstairs, had a dance party, watched an exciting movie and been over all wild and crazy.  We are going to end the "vacation" with a big bang of going to a tiny amusement park.  This is what life with a very special needs child does to the family as a whole.  It makes every member of the family have to deal with all the emotions in the book on a daily basis and then deal with other emotions when he isn't here.  My shoulders began to tense just writing about him coming home tomorrow little PTSD for old mom?  Maybe just maybe :(

Day 5 of Hospital Stay #5/ Recharge

So JD has been in the hospital since Tuesday (4am).   At first I was a little concerned because unlike all the other hospital stays this place did not do anything for the first 48 hours.  Usually they start messing with the meds the first day there so they can get him home again as soon as possible.  But I did not hear anything until Thursday when the pdoc called and said he wanted to add a second mood stabilizer Lith*um and discontinue the Stra*tarra.  I am fine will all that.  (as long as they do it while he is in the hospital)  So as of now it looks like a discharge date Monday.  He will have to have the 3day Lith level drawn on Sunday so we shall see if he hits a therapeutic dose quickly.  I did find it interesting that the doctor said on day one JD said he did not like the place and wanted to run away.  I immediately said that isn't a JD thing to say and he was like oh there were other little kids saying it first he might have been just copying them.  Well let me tell you that is what he does this is where the MR comes in.  This is also why we pulled him out of RTC early because he was copying behavior's that the other kids were doing and had no idea what they meant he just knew that the behavior got major attention.  And my guess is if you say you want to run away you get more attention also.  And for an MR (autistic) kid doesn't really matter if it's positive or negative attention just that it gets a reaction.  I did like what the doctor said to me as he was hanging up he said "we've got him take this time to recharge"  . 

Me relaxing and recharging!  (in my dreams)

This is for all of you that know me in the "real" world I thought you could use a good laugh~

so meds as of 10/22/11
Dep 500 am 500 pm
Tenx 1 am, 1 noon, 2 pm
Lith 300 am, 300 pm
Seroq 100 am, 100 noon, 400 pm
I wish I would have been blogging these last 5 years so I could have a good list of all the meds he has tried in that short time.

UPDATE: One is Harder than Five!

Some days the math just doesn't add up!  I have 6 kids but some days you would think that I have 1 because that 1 is getting all my time/attention/help.  Today was one of those days.  JD was having a very bad day,  I saw it in his eyes the moment he came downstairs.  I could tell that he had not slept well which is warning bell number 1, I also saw that he was having a hard time listening/comprehending what was going on.  I thought I had caught the signs early enough that we could head it off at the pass.  But no not today!  Today was a "going to rage come hell or high water day"  and RAGE he did for almost 2 hours.  Finally ended up in a hold because he kept saying he was trying to break his leg!  And the way he was flopping, jumping, kicking around I was afraid he would hurt himself.  But luckily I was able to help him get calm enough to start breathing better and he pulled it together.  But the problem is I had three 3 year olds who also needed me during those 2 hours.  I was lucky today because they sat in their high chairs and played with stickers and watched TV until it was time to do the hold and I was able to get them up stairs in the game room while I was down stairs doing the hold.  I just feel like the world has to come to a complete stop when JD needs me!  I have a safety plan in place as far as I can put them somewhere away from him while I do the hold but what if today would have been one of those days that he decided he wanted to really hurt me or himself?  I called our back up sitter to see if she could come over but she was at an appointment with her little boy.  So even if I would have needed to call the ambulance it would have been very hard because my husband cannot leave work on Monday's and the ambulance will not take a 10 year old to the hospital for a mental breakdown without an adult coming along.  So I guess I need to have plan A, B and C all for the safety of one of the 6 children.  I'll add that to my list of things to figure out.  Some days it feels like all I do is try to figure out how to keep JD and everyone safe at all times. ...................

So I posted the blog above on Monday afternoon little did I know that the worst of the day wasn't over after all.   When "nap" time was over JD came down stairs with the same "look" in his eyes that he had that morning.  I was like no way I cannot do this again today. But it doesn't matter if I can do it again or not it has to be done.  Long story short we went through the same thing as we did in the morning.  Manic/ out of control/ could not settle/ raged.  So I decided it was time to go to plan B which is call in the professionals.  Luckily my afternoon sitter was able to come right over to take care of the other 5 kids while I had JD in a hold and waited for the EMT/Fireman/Policeman to get there.  I had already call all the psy hospital's and none of them had a bed open so we had to go to the ER and wait to be transferred to the closest hospital with a bed which happened to be an hour and a half away from our city.  Anyway we checked into the ER around 5pm and had to stay there until 12:45 AM when the ambulance transported him to the next hospital.  We got there around 2 AM and I got him all checked in and settled at 4:30 AM (then I had to run to Wal-Mart and buy him some shoes)  So I did not get to head home until 5:30 AM so needless to say I was exhausted both mentally and physically after this day.  I wish I could say X happened which then caused Y and Z to happen but really this time it was just a wake up something not right day went to hell in a hand basket kinda day.  And again like the post above JD took all of my time/energy for that 24 hour period.  So the next day I felt like I was having to help my other 5 emotionally deal with the fact that once again mommy had to leave and was gone until the next day.  I need to say I know I'm blessed to have two sitters that I can call in times like this.  And that sad as it is I do enjoy the break of him being in the hospital so that I can give the other 5 some much needed attention.

Horses!

On the 12th I had a good mommy day with Tini and JD.  They had their first equine therapy class (horse class) of the year (1st ever for Tini).  Any way it was at a new ranch (closer to home) which makes me happy.  When we got there I got a couple of great pictures of the happy kiddos.  Then JD went off for his class and Tini and I sat together while she colored.  After JD's class it was Tini's turn.  I walked her up to the barn and fixed her helmet and said have good class and I walked away with tears in my eyes.  Tears?  Why?  Because we are talking about Tini my first born little girl who from the age of 16 months to age 4 years hardly ever walked anywhere because I carried her everywhere.  And she had major separation anxiety if I even dared to walk out of the room.  So to flash forward to her being a big 7 year old that was ready to tackle her first horse class all by herself.  I was amazed at how far my baby has came.  I know all of this is a great thing but it's still hard to see my baby not need me as much.  Both Tini and JD were wonderful on the horses.  I'm glad I found a therapy and therapist that works for both of them! 

Houston we have a problem!

"You have a problem" ~ wise words from the old man that raised me!  Wow nothing like feeling like a failure at parenting/marriage/life in general! 

What's the point?  Yes I have 3 special needs kids (and triplets) !  Yes some days are really hard!  Yes sometimes parenting isn't 50/50!  Yes I have days when I question everything!  But do you really need to point that out? 

And if you do want to point that out.  Do you have a solution?  Any words of wisdom?  Or are you just letting me know that everyone knows that I have a problem? 

prob·lem [ próbbləm ]

1. difficulty: a difficult situation, matter, or person
2. puzzle to be solved: a question or puzzle that needs to be solved
3. statement requiring mathematical solution: a statement or proposition requiring an algebraic, geometric, or other mathematical solution

Ok so we have established I have a problem i.e.  special needs kids,  crazy husband,  busy life, over weight, grumpy old hag.

 Now, who has a :

so·lu·tion [ sə lsh'n ]

1. way of resolving difficulty: a method of successfully dealing with a problem or difficulty
2. answer to puzzle: the answer to a puzzle or question
3. finding of answer: the process of resolving a difficulty or finding the answer to a puzzle or question

Guess what I'm the only one working on a so-lu-tion for MY family so don't worry yourself with my prob-lem!

I know,  I know he didn't mean anything by the statement it just hit me really hard and I know that I'm giving everyone 100% now it might be time for me to give myself 100%.

What do you say when it's all been said?

I'm beginning to think that I spoke to soon about the fact that we made it through September.  Historically March and September are JD's worst months!  You know as the mental health people call it - March Madness and September Slide.  Well I was all proud of myself thinking yeah this whole keep him with me 24/7 parenting thing was making a huge difference.  Or maybe not.  We had one of those fugly days today!  You know the Dumbass/Bite the shit out of your mom days!  And when those days happen I always try to find the "trigger"  you remember last week I complained that it was the Costco trip.  Well this time I'm blaming it on the boots!  Boots?  Really?  Yes really you see today was supposed to be our first horse "class" of the fall.  But due to the fact that the "Daycare" Van is in the shop and my sitter canceled at 7:45 AM there was no way we were going to make it to our first class! (sorry Ms. K.)  Any how back to the boots.  I told JD this morning "hey JD we cannot go to horse class because Ms. D canceled and the van is in the shop"  and he was like ok maybe next week.  And then without even thinking I said "but you know we need to go buy new boots before class anyway so it's no biggie that we had to miss today!"  I went on about my business you know running the household as I do (ok I was really just emptying the dishwasher and talking to my best friend "Ms. Red" on the phone).  I happen to glance at the play room camera in time to see JD manically tickling Pink Lady sister!  And no in a NT kid's life tickling your sister means nothing but in JD's life I know that he is now manic and needs to be removed from the situation.  So thinking that I caught it in time I calmly call him out of the play room and say "go do your puzzle"  and his answer to that was to turn and stomp.  Ok again not a big deal for a NT kid but for JD that is a sign that all hell is about to break loose and that's exactly what happened for the next 45 minutes.  I tried the ignoring the behavior,  I tried the stop that right now, I tried the therapeutic B.S. saying "JD you need to help yourself calm down"  (and no I'm not bashing therapeutic parenting I'm just saying that when JD #2 comes along he stims off of me trying to be all "let's calm down"  the response I got to that was "Mommy you a Dumbass, Dumbass, Dumbass, Dumbass!"  Sorry but really not feeling very therapeutic at that point.  Any way it ended in a hold where I got two nice big bites on my arm and a couple good head butts to my collar bone but then the switch flipped and and JD was back!  And thinking what the hell just happened.  Really did the change in the schedule and the excitement of just the "idea" of new boots send him to this level.  Yet it did and that's where I'm left going what the hell am I supposed to do now?  I end up wanting someone to come in with their merry f'n sunshine wand and do a little magic and cure my son!  But guess what there isn't any magic wand (and if there was one JD would stim off the pretty lights it made).  And there isn't any CURE!  FASD/Autism/BP/1q 21.1/MR/ODD/Tourette's/ADHD/ DX--ABCDEFG!   all SUCK and NONE of them have a CURE! So that's what I mean about saying what's already been said!   I have read blogs/books/articles they all say the same thing you cannot fix it you can just do the best you can even when you feel like your best isn't good enough ever!

Flying your Freak Flag!

So this weekend began the "birthday season" for Pink Lady, The Middle Sister and Baby.  They have 8 friends having birthdays this month plus their birthday is this month!  So Saturday we went to the first party it was a Train themed party from 10:30-12:30 the birthday kids were turning 3.  We get there at 10:30 on the dot but it is already a busy party tons of little kids ages 1-4 and I roll on up in there with my 2,2,2, 7, 10 and 11 year olds.  First I must point out this MOM of the kids is one of my best friends but she is not a Trauma Momma she has three beautiful NT kids!  But she loves all 6 of my kids and knows that we have some issues but she is super cool about it all.  So she is not the issue.  And I will admit that I"M really the ISSUE just let me explain.  Ok so back to the busy train party. Outside there were three options for play,  a tennis court where some of the little tikes were kicking around bouncy balls, a swing area with two swings and a smallish play scape best suited for 3-5 year olds.  Low and behold the second we get there JD and Tini head right up to the play scape and start climbing, sliding, running right along with the toddlers.  Luckily Jose went to kick some balls with the other toddlers.  So I guess it was my bad to even think about taking the older three to the party.  Because Tini fell like 10 times while there and when Tini falls the world must come to a stop so she can have a full on melt down.  And here is the real problem JD isn't a small kid he is a 5 year old in a 10 year olds body! So yes he was having a great time but as his mom watching him I just felt like everyone was watching his quirky little things thinking what the heck why is that big boy acting like a 5 year old.  BECAUSE people he is 5 developmentally.  At one point JD got a little hot from running around so he did what he always does he plops down on the ground like a wilted flower with his head hung low and his mouth open and just stares off into space or at people what ever.  And another friend saw this and came up to me and said "hey is JD ok? Is he hurt?" and I was like no he is just hot so he is taking a little break.  The biggest problem with taking the break was he just plopped right down on the ground close to the bottom of the slide and parents were walking around him to help their kids off the slide.  And this is where it comes back to my ISSUE I have a hard time with my kids "standing out" in a crowd.  When am I going to get over the fact that my older three are never going to "LOOK" like , "PLAY" like, "ACT" like the rest of the world?  Three years ago before the girls were born and we didn't really have to hang out with NT kids as much I never really noticed how the big kids stick out? Or maybe when they were only 16mo. 4 yrs and 5 yrs.  they didn't stick out because a "silly quirky" 4 year old is cute!  A "silly quirky" 10 year old can be just plain weird.  Oh what the hell.  Get over it already let your kids be who they are quirky and all!  Yeah right I'll do that right after I grow a thicker skin, take more meds and or start drinking at noon.  And I know for some of you this is no big deal you just take it in stride when your kids fly their freak flags for all the world to see!  So I guess my goal for the rest of 2011 is to let my kids be who they are in public and say what the hell think what you want.  Because at the end of the day these are my crazy little freaks which I love very much!  (but really could you leave the flags in the van next time?) 

P.S. The "freak" in this blog is me!  I know!

Rainbows and Unicorns!

One of the best things about having JD with me all day every day is the fact that sometimes I can see the ques of something about to start!  And if I'm quick and smart at that moment I can redirect him and stop the cycle before it starts!  But the window for catching these little ques is so very small and no I do not sit around and stare at him all day trying to watch for the ques!  But when I do have a success I'm so very happy that I was able to stop it before it got out of hand.  And we had one of those moments today!  I had two warnings within 30 seconds of each other Warning #1 weird unexplained laughing!  Warning #2 grabbing at the baby as she ran by (all while doing the weird laughing).  So being the on top of it mom that you all know that I am (NOT)  I quickly said "JD head upstairs and do your puzzle"  and he smiled at me (the my brain isn't working smile) but he said yes and went on upstairs and what ever switch had been flipped the wrong way flipped back the right way and we ended up having a great morning!  So there's your rainbow's and unicorns for the day!  ENJOY!

Dumb ass before 10 am!

As I stand here in the kitchen trying not to be pulled into the crazy world that is my son's life.  I feel so sad!  He just yelled "you a dumb ass" which means that JD #2 is in the HOUSE!  Who let him in?  He had been gone for a few weeks.  I know,  he must have followed us home from Costco last night!  Then he must have proceeded to keep JD awake all night so that he (JD #2) could settle in for long stay!  Wow now I've been up graded to "Mrs. smarty pants"  you might wonder why is she blogging while her child is raging and yelling names at her! Well I'm blogging so I do not engage in his break down because if I engage we could be in for an even longer day!  Now he is yelling "I want to make myself dizzy, clapping, barking like a dog, more clapping,  NOOOOOOOOOOOO!!!  BARK, BARK!!!!!  aaaaaaaaaaa!  THINK OF THAT!" 

 I can stand here and try to ignore all of this but sadly I know when it's this bad the only way things are going to end is if I go and put him in a hold so he can use my breathing to help him get himself in control.  Well you know what I don't want to do that!  But that is what he needs so I must do it!

 I HATE holds!  I HATE having to remain calm while having the shit beat out of me, and being called every name in the book but that is what being a full time mommy means when you have a very sick child!

 It ended up not taking very long once I stepped in to help him get himself back into JD  mode but to be honest I'm not sure JD#2 isn't still hanging around the house.   He needs to go on back where ever he came from and not visit ever again!  Oh well for right now all is well.  JD is doing a puzzle which usually bores JD #2 so maybe he will go away from just being bored. You know he really likes things to be WILD and CRAZY and that's not how JD is rolling right now so again I'll say maybe things are getting better today!

The Two Sides of Me!

I feel like I lead two different lives now.  One is a Trauma Momma life and one is a Regular Momma life.  And I try to never ever let the two mix.  Sometimes I don't let them mix because the Regular Mommy friends get a little freaked if I talk about how JD tried to choke me to death back in July during a rage/seizure/moment from hell!  When I talk to other Trauma Momma's about it they are like "oh yeah that's not cool hope he was able to get into the pdoc that week".  And my Regular Momma friends are like "WTF are you ok?  Is he Ok?  But he seems like such a sweet boy!" The last one always gets me.  Yes he (JD #1)  is a  wonderful, funny, sweet 10 year old that loves me as much as his little heart can!  But when (JD #2) shows up his brain misfires or goes hay wire all bets are off!  Choking, name calling, biting, hitting, body slamming, death threats that is what come out of that cute, sweet, funny little boy!  And for some people it is hard to realize that JD #1 and JD #2 are really the same person.  And no I do not want anyone to ever have to see JD #2 but believe me I've seen him way to many times.  I think I'm having a hard time with this this week because of the fact that he is with me 24/7  now days so I do end up having to mix the two sides of me.  Example Pink Lady, The Middle Sister and Baby  have a set play date every Thursday morning with their friends.  Which includes 4 other NT 3 year olds.  And JD now has to join us for those playdates since he is ALWAYS with me!  And even though my "regular" friends are sweet and wonderful and are always nice to JD#1,   I spend the whole play date worrying that JD # 2 might show up at any moment.  But I cannot live only in one side of my life so sometimes I will have to cross the mid line and just pray that everyone can handle the reality of my life!

little yellow pill

So I woke up in the grumpiest mood ever today! And had made everyone cry by 8:30 (ok not everyone just the Trips they did not like the word NO! ) But when JD came down stairs I immediately knew that I had to get my emotions under control right away! Because even though JD was not born from my body I swear to God some days it feels like he is still attached by the invisible umbilical cord! Meaning any thing I feel he feels and feeds off of! I did not want to be grumpy this morning I just was. But then I got even grumpier thinking I had to stuff my feelings back in before it set him off. Can you say walking on egg shells. It's not normal to not be able to express you emotions in your own home because it might cause your 10 year old to go manic! So I successfully stuffed said emotions (ok with the help of the little yellow pill that is mommy's friend) and then was able to help everyone get started on their day! Which means the Trips went upstairs to the game room with JD while I got all our school stuff set up. And all was going according to plan until someone decided to ring the door bell. Heaven forbid that was all it took to send JD on over the edge of Mania!!!!!!! (and it wasn't even anyone visiting it was someone wanting to sell me Jesus) But just the thought of something out of order, off schedule was enough especially when we started the day off with mommy daring to show emotions! So I had to bring JD downstairs and find something to help him regroup. I thought I know I'll send him out to sit on the back steps and watch the birds at our new bird feeder. (nice calming activity) NOT it was to hot out there so he had to sit and stare at the house instead! Nothing is ever just easy with this kiddo! And all I can say is thank god for "mommy's little yellow pill" since 8:30 am is a little early to start drinking

P.S. before you go calling some crisis hot line for me taking a "little yellow pill" it is just my prescription  anti anxiety  med!  (as in my doctor gave it to me not someone on the street corner) 

But I do find the lyrics to these song very funny on days like today!

The Rolling Stones
Mother's Little Helper
(Jagger/Richards)

What a drag it is getting old
"Kids are different today"
I hear ev'ry mother say
Mother needs something today to calm her down
And though she's not really ill
There's a little yellow pill
She goes running for the shelter of a mother's little helper
And it helps her on her way, gets her through her busy day

"Things are different today"
I hear ev'ry mother say
Cooking fresh food for a husband's just a drag
So she buys an instant cake and she burns her frozen steak
And goes running for the shelter of a mother's little helper
And two help her on her way, get her through her busy day

Doctor please, some more of these
Outside the door, she took four more
What a drag it is getting old

"Men just aren't the same today"
I hear ev'ry mother say
They just don't appreciate that you get tired
They're so hard to satisfy, You can tranquilize your mind
So go running for the shelter of a mother's little helper
And four help you through the night, help to minimize your plight

Doctor please, some more of these
Outside the door, she took four more
What a drag it is getting old

"Life's just much too hard today,"
I hear ev'ry mother say
The pursuit of happiness just seems a bore
And if you take more of those, you will get an overdose
No more running for the shelter of a mother's little helper
They just helped you on your way, through your busy dying day

What the Hell is Normal?

So I feel like I'm a bottle of emotions all shaken up then dumped out!  So if I feel that way why would I expect my kids to be any different.  I think I have really done a crappy job lately in the way that I react to my older three kids.  I know that I've screwed up because Jose's new thing is "I wish we were a NORMAL family"  wtf?  First time he said it yesterday we were all in the van (minus Daddy Mojito)  .  When I asked who/what he was talking about he said he was talking about Tini because she would not leave him alone and listen already.  Ok what ever.  Second time was when Jose was supposed to be folding laundry (one of his paid for chores)  I walked in and he had made a "nest" out of the clean laundry in my floor and was curled up in the nest pretending to sleep!  I was none to happy to find him this way.  Remember he is 11 and the one with just a little ADHD (yea right keep telling myself that so I can make it through the day)  And upon finding him in the pile of laundry I started in on the WH's.  You know the Why? What were you thinking? and none of my kids do well with the WH's and all it does is set me and them up for a big meltdown.  So I was ranting on about What were you thinking? Why did you think that was appropriate?  WTH you are 11 dude!  To which I get the "I wish we were a NORMAL family" saying again!  So for the second time in the day I said what are you talking about?  As he grabs his head and starts crying he says "Me, JD, and Tini aren't NORMAL!".   At which point I turned and walked out of the room!  Go ahead judge me but really what was I supposed to do with that one!  He is right all three of them have developmental delays (JD and Tini much worse than Jose) but really some stuff cannot be blamed on a label, or disability!   Am I expecting more than their  brains can handle?  Am I putting to much pressure on Jose' to be typical when he isn't?  Therapeutic Parenting SUCKS!  I'm glad some of you are perfect at it but as far as me I get a big fat F most days.  The only other time that we have had the "wish we were a NORMAL family" comment from him was when his brother or sister was raging (who knows which one because one of them does it daily)  And that time I agreed that yes NORMAL would be nice but there was no such thing as the NORMAL he was talking about he wanted a family where everyone was peaceful and quiet and always got along and everyone had their own private space where they could sit quietly and think!  Nice dream Jose but not sure you are going to find that anywhere around here in the REAL world!  So I  named all our family and friends and went through the list of why they were no more NORMAL than we were they just did not have to deal with Rage everyday!  And I do feel for him because the Rage days can send us all over the edge but really what do I need to do to make him feel more NORMAL?  Open for suggestions!  But the only way you can criticize is after you do a 27/7 shift here in the crazy house!  Then I would be open to your thoughts!  :)

Blame it on the MOM!

So I tried to let JD do "school" in a different room where he would still be able to hear me but I would just be around the corner from where he could "see" me!  Because we are trying to not get locked into the you must sit in the black chair facing north with the temp set at 74 degrees while Mom stands to the west facing east!  Well it's not really that bad YET but I really want to keep it from getting that structured!  Don't get me wrong I know that my kid thrives on a set schedule and routine but don't forget he isn't the center of the universe and sometimes you might need to sit in the brown chair instead of the black one facing north!  UGG one of those getting frustrated because I'm trying to PUSH him a little out of his box!  But wait didn't I just have a lesson on Newton's Third law!  Well we can see that I did not retain that info.  Maybe it's me that needs to work on teach, teach and reteach with myself not JD!  Wow it really is all the Mother's fault!

KEEP WORKING!

So JD and I do "school" every morning and every morning at least once I have to walk at least 10 feet away and out of sight from him (I know how dare I)!  Anyway when I do this all work stops!  It doesn't matter if he is doing simple 1+1 when I walk away the brain stops and everything comes to a complete halt until I reappear and then just like magic the brain clicks back on and the work continues!

Reason, Season or Lifetime?

Reason, Season, or Lifetime
People come into your life for a reason, a season or a lifetime.
When you figure out which one it is,
you will know what to do for each person.
When someone is in your life for a REASON,
it is usually to meet a need you have expressed.
They have come to assist you through a difficulty;
to provide you with guidance and support;
to aid you physically, emotionally or spiritually.
They may seem like a godsend, and they are.
They are there for the reason you need them to be.
Then, without any wrongdoing on your part or at an inconvenient time,
this person will say or do something to bring the relationship to an end.
Sometimes they die. Sometimes they walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and now it is time to move on.


Some people come into your life for a SEASON,
because your turn has come to share, grow or learn.
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount of joy.
Believe it. It is real. But only for a season.


LIFETIME relationships teach you lifetime lessons;
things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person,
and put what you have learned to use in all other relationships and areas of your life.
It is said that love is blind but friendship is clairvoyant

~Unknown

What will be the price to pay for today?

So Jose, Tini and JD wanted to go see a movie with their favorite Uncle Traditional  when he was in town for the weekend!  I was only going to let Jose and Tini go because I know that JD isn't really stable enough to be able to go without me to a movie that is very flashy/loud/over all fun!  Any way I decided what the hell I gotta let the kid live a little even if it means that I pay the price the rest of the day/ rest of the week/ rest of the month!  And by pay the price I mean knowing that this one exciting activity could send him into a cycle (worse than the one he is in)  so instead of 3 behavior's, 2 seizures and a whole lot of quirky things it could be double or triple all the above for up to a week!  You are probably saying no way could one movie cause that much deregulation!  You wanna bet!  It isn't only the movie it's riding in Uncle Traditional's new car, sitting next to Tini in said car (she is one of his triggers),  going to a theater that is new to him,  being off schedule the list goes on and on.  And some times I am not strong enough to let him go out of his little bubble (known as being attached to my hip 24/7) because I'm not sure I can pay the price for that little bit of "normal" for him! :(  But on the flip side while he wasn't attached to my hip Daddy Mojito and I were able to take Pink Lady, The Middle Sister and Baby to a restaurant that is a big NO on the places that are acceptable for the whole family. So for those three hours of freedom with no JD on my hip I was able to laugh when the girls started dancing to loud music as we walked in.  I was able to enjoy the lunch not worrying about the bright lights/loud music/ packed with people restaurant.  Because if JD was with us it would mean that any of those things from his sisters dancing to the amount of the people around him could have sent him into a seizure/rage that would end with me in the van holding him while the rest of the family ate lunch! 
I do have to give major props to Uncle Traditional he was able to see the "tweaking" that JD did during the movie so he could let me know that it had been a little flashy so I could be more prepared for the evening/week ahead! 
Wow for a Whine of the MONTH Club I sure seem to whine daily instead of monthly!  Oh well this is my life and I'll whine if I want to!

Newton's Third Law

Every Action has an Equal and Opposite Reaction

When oh when am I going to learn this lesson!  So JD has had a very bad last 24 hours.  Let me start with a little example of how "off" JD's brain was yesterday!
12:15 pm
in the van---

Me:  "JD park day might be canceled because it might rain"
JD: "ok"
driving.......driving......driving......
12:34
JD: "IT MIGHT NOT"
Me:  (in my mind) "what the fuck"
Me: (out loud) "what"
JD: "it might not rain and cancel park day"

Ok then so it took him 19 minutes to process that it might not rain.  Oh well what the heck he is just a little "slower" than normal to day!  And Pink Lady, The Middle Sister and Baby wanted to go shopping at Target!  So I stick with my schedule and headed to the nearest loveliest brightest lit Target I could find (that had a triple sitter cart)  And shopping we go!  End up back in the dairy isle where Baby is saying HI to anyone that will give her the time of day!  And one wonderful couple stopped to say hi and asked the girls names and Baby said hers and The Middle Sister said hers and then they both answered for the Pink Lady who pretends to be mute when spoken to by strangers!  And as the two year olds are doing this JD is standing behind the cart saying "MY NAME IS JD AND I AM 10"  luckily the nice couple stopped talking to the 3 almost 3 year olds and talked to JD!  But I could not help but feel sad for JD yes the 3 were getting lots of attention and yes I always also introduce JD but yesterday he did not have the impulse control to not interrupt and he wanted the couples attention right away.  Make me sad.  Yeah Yeah I know it's all about the Mommy Merlot and how she feels (NOT) but anyway it is my whine club so I will whine if I want to!
Fast forward to back at the American Dream House with the Dream Yard!  I decide ok today is the day that I'm going to let Tini, The 3 and JD play outside without me being 2 ft away!  But that does not mean I can just open the door and say see you in a few have fun!  No Tini and JD need the basic rules told to them every time they do any activity!  So with JD it was "do not touch the water hose" "no water hose today" "do not touch the black water hose" yes I said it three different ways in the hope that one of the three would get into his brain!  2nd rule do not touch The 3's water table!  NOPE no such luck 5 minutes into independent play I walk by the window where I have been keeping an eye on them the whole time and what do I see?  I see JD sitting criss cross applesauce in the middle of the yard with Daddy Mojito's back water hose in his lap taking apart the spray nozzle!  I LOST it!  Didn't I just tell this kid in three different way not to TOUCH the damn hose!  So Mommy Merlot yells JD get in this house right this minute where I then decide to lecture and scream for 10 minutes (none of which he heard since his brain shut down when I yelled JD!!!!!!!!!!!) I made him sit in the middle of the living room for 5 minutes in a "time out" knowing damn well no matter how much I scream, threaten, spank, remove, redirect, punish none of the above will keep him from doing the EXACT same behavior tomorrow.  Unless I'm sitting two feet away from him so he can look up at me and remember oh yea mom told me to leave that alone.  Back outside he goes after time out this time he  makes it 5 more minutes before the whole thing starts again this time he is reaching through the porch rails to get to the forbidden water table!  At that point I LOST it again (because it worked so well the first time)  and yada yada yada did all of the above this time though he had had it with my reactions and decided that it was time to react back to then begins the fun of Newton's Third Law.  So back and forth reaction=equal reaction we go until we are both tired and frustrated and not liking each other very much!  But then as we both started calming down we were able to save the rest of the evening which is good since it started all again first thing this morning!  Ohhhh!!!!!!!!  I really must learn to parent smarter not harder! Because the last few hours have been very very hard!  I will try again next time to be a better Mommy Merlot because I really fucked it up the last 24 hours!

You are stressing my brain out!

So one of the many reason's I decided to home school JD was so that he could do his academic work in a less stressful environment! He always said "school stresses my brain out"! So why the hell did I flip out on him when he was not following instructions!  It wasn't like he wasn't doing his work he just did not stop half way down the page like I asked.  Then I flipped on him because he went all Rainman on me and did not want to do his spelling test "out of order" as in he knew the whole spelling list 1-20 in order and I was mixing it up a little!  Well note to self- do not mix up spelling list on the test day because you feel like an idiot when Rainman tells you what word you did not call out! Plus if I look he was just modeling my behavior, I wanted him to stop half way down the math page and I flipped when he did not ,  and he wanted to do the spelling in order and I didn't so he flipped! Things that make me say hummmmm?

The cliff notes of the day!

So today I tried to pretend that we were the typical American family (you know mom, dad 2 1/2 kids)  But really we are so not your typical family!  We are a mom (Mommy Merlot) and a dad (Daddy Mojito) , and 11 year old (Jose'), 10 year old (JD), 7 year old (Tini), 2 year old (Pink Lady), 2 year old (Middle Sister) and 2 year old (Baby).  So in case you lost count that is 1 mom, 1 dad and 6 kids.  We did just move into our "American dream home".  But that's about as close to to traditional 'americana' that we get!  Ok so back to my bitching about today!  Today was one of those days when I thought you know what Pink Lady, Middle Sister and Baby need to be involved as in need to be going to gym, swimming, MDO out you know all those things that typical (almost 3 year olds) should do. So the first call was for Middle Sister to go to swimming class.  Off to a good start yes they could put her in the Wednesday class no they could not put her in the kid only class gotta be the mommy and me class.  Ok so I think cool then I'll just leave Pink Lady and Baby at the sitters house and JD and I will take Middle Sister to swim on Wednesday's. Oh but wait it's and indoor swim place you know smelly chlorine, bright lights and noisy!  Yeah JD doesn't do well with all that!  So strike one of the planning.  On to MDO program at the Y!  You might wonder why not just join the Y and let Pink Lady, Middle Sister and Baby play in the play area while you exercise?  Well I'm glad you asked it's because JD is with us all day everyday and he has been kicked out of the Y!  Ok back to MDO cool it's in our price range, it's two days a week but oh wait Wednesday they would need to be picked up at 1:00 well guess what JD has therapy across town at 12:30!  :(  Strike two at that point it was time for me to sink into a little depression otherwise known as pity party for Merlot Mommy !  It went something like this "oh why oh why can't I keep up with the Red's poor poor pitiful me"!  Wa WA get over it already!  Need to do a little attitude adjustment!  1.  I have six "healthy" kids ( you know if you ignore all that mental illness and different syndromes thing)  2.  I do have the "American dream house" 3.  I am blessed beyond belief with a wonderful support system (even if the biggest support is a "Red")  Oh well count my blessings and move!

A small glass of wine!

As I stood in the kitchen of my new home watching my 10 year old son struggle with basic addition. I happened to click on FB and take a little break from the stress of trying to re-teach a basic math skill. When I happened to see that one of my "friends" was talking about thinking she was in labor at 39 weeks. And one of her "friends" posted this little bit of advice:

Warm bath, small glass of wine, two Tylenol and straight to bed if they get consistent. this is the advice most midwives would give you. If it is labor you will not be able to stop it with that and then you will know to go in. Sounds like a normal pattern at your amount of weeks though.

With friends like that who needs enemies? You might wonder why I would be so pissed reading that little advice of the day! It wasn't me she was talking to! I also love to drink wine! But the reason I saw red when reading that was because I know first hand what the affects alcohol has on a developing baby (and yes at 39 weeks the baby is still developing).

You see the 10 year old that I was reteaching basic math, well he has FAS! In case you live under a rock or have your head in the sand let me tell you what FAS is- It is Fetal Alcohol Syndrome! Yes his birth mom decided it was just fine to drink during her pregnancy! Was it a glass or two here or there? Binging? Daily drinks? Who knows and it doesn't matter what matters is the fact that she damaged her child before he even took his first breath! And because of her choices my son has to struggle to do the simplest things like, math, making friends, controlling his emotions, doing daily tasks.........

September 9th is FAS awareness day and you might ask what did I do to make a difference on 9/9 this year I did nothing I was to far in the trenches taking care of my son. Because it really takes me being there for him helping him make it through a world of pitfalls that his brain cannot handle. Maybe when he is older I will be able to do more to help make people aware of this 100% preventable birth defect.

But on the other hand as a person that has carried babies inside her, it just blows my mind that a person could even think that it was ok to put things into the very body that is the life source for her baby. Are people stupid, or do they just not care or all of the above. Oh well this Whine of the Month Club will be my ramblings about daily life with children that have been robbed of their full potintial all because of someone elses choices.


Mommy Merlot