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!