UPDATE on 10 Happy Faces vs. 5 Sad Faces!

UPDATE:  While I was on my way to the supermarket this morning I got a call from the school nurse about Michael having a splinter in his finger and he WOULD NOT let her take it out so I had to detour to the school.  So after playing dr at the nurses office and getting Michael safely in his classroom I went and looked for the special ed case manager for the boys to discuss this 5 sad faces issue that was still bugging the shit out of me!!  I have her in the hallway and I say to her "You know what I have been thinking about this all weekend and I don't think it's fair to any of the kids in that room to have a rule change to suit her needs and set all those kids up for complete failure.  I am espically concerned about all the kaios in her classroom.  We are right outside Michael's classroom and you can't hear those kids breathing but we are now standing 20 feet from her class and what I hear is them carrying on like kids will when there is NO AUTHORITY!!  If she doesn't control her classroom that's her fault, NOT MY SON'S!!  5 sad faces a month means that in any given month they can go to school up to 20 days and if he gets 15 happy faces YAY for him .... BUUUUUUTTTT if he gets 5 sad faces so he can't come to the party???  So the negative SEVERELY OUTWEIGHS the positive here!!  My son should come to school in a positive environment.  That classroom is not condusive to his learning style but it is most certainly condusive to her teaching style.  I think he needs a calmer learning environment such as Ms. D's classroom so he will succeed!"

She says "well if we switch him, he will still have consequences in any class we put him in.  Also if we DO put him in Ms. D's classroom they very rarely have parties."

So I said "You know what he would go into that classroom knowing that whether he gets happy or sad faces...no parties means no parties FOR EVERYBODY, not just HIM!!!!  He won't be working SO HARD only to be told at the end of the month that he CAN'T attend a birthday party because he got 5 sad faces that month when he got 15 happy faces!!  It's SHEER NEGATIVITY and it sets ALL those kids up for EPIC FAILURE!!"
I was ready to switch him until he came out and said this to me "Mommy I like Ms. V's classroom and I am brave enough to handle it.  Please Mommy I know you want what's best for me but I really wanna stay where I am for now.  I get happy faces in her classroom and I love Ms. V!"

Of course I melted and because he asked me NOT to move him, he remains in her classroom but I PROMISED that if he came home and complained about the kaios in that room again and he says "Mommy, I can't take it" HE'S OUTTA THERE!!!

After all was said and done his behavior specialist came to me and said that the notice was NEVER meant for CJ....it was meant for the kaiotic kids in the classroom!  She would NEVER UN-include him in a birthday celebration and she totally understands why I would be reacting the way I was and is truly sorry I took it the way I did.  She FULLY understands what is going on at home with CJ and she gives him as much breathing room as she can to help him succeed in the classroom.

BTW, he has been getting happy faces for the majority of this month in school!!  I am so proud of my BRAVE BOY!!

Heard a crash again!

3:40 this morning I heard what sounded like crashing metal like maybe cookie sheets falling to the floor.  I get up and go check on the boys and they are fine, then I go check on Pita and he is awake but everything is fine.  I asked if he wanted me to put the blankets on him and he said yes so I covered him up, checked his heater and went back to bed.  Now I can't get back to sleep so I made myself a cup of coffee and started making out my shopping list for today.  I jumped on the computer for a few minutes, drank my coffee and started yawning and wanted to go back to bed so at about 4:40 this morning I decided to try and go back to sleep.  Took me a while but I eventually fell back asleep.

That's when I had a horrible dream.  I dreamt that I woke up this morning and went to check on Pita and had to come downstairs to call my sister in law to come get the kids so I could call Hospice and the undertaker.  Needless to say I was completely discomboobled when I woke up this morning and was afraid to go check on him.  I made him a cup of tea and went in and I put the blankets on him and he didn't move like he normally does.  So I softly called his name and he was startled awake.  I told him I made him a cup of tea, kissed him and told him I loved him and left him to sleep.

Not in the best of moods today because of that damn dream!!  I still have to get the gumption up enough to go to the supermarket.  Not going to be a good day, I can feel it!!

Went well

Ms. J the Hospice Child Grief Counselor was here and we talked for a few minutes just her and I.  I told her what has been told to the boys so far and the terminology we have been using for the cancer, death and dying and Daddy being so sick with the boys.  She told me that I was doing a very good job by not sugar coating it for them but at the same time I wasn't scaring them either.  She told me I was very brave for keeping an open dialogue with them throughout this entire ordeal with them.  The know and WILL ALWAYS know that they can come to me for anything.  She also told me it's ok for me to have my moments of weakness in front of them because it shows them that it's ok to show emotion BUT to save the REAL BIG crying for when they aren't around.  I also shared our plans for his remains and she said that was a lovely idea.  She asked where his ashes will go and I told her probably in the dining room so that he can always be with us here.

After we talked she talked with the boys and it went very well.  They felt comfortable enough to open up WIDE for her.  They told her all their feelings and drew pictures for her.  CJ said he got a germ when he was 2 and that is why he is sick today and I asked if he was talking about his Autism and he looked like he wanted to say yes but said no.  I explained that Autism is NOT a germ but rather a gift from GOD that was given to him for a specific reason and that reason is to change this world I believed.  I hope he doesn't start thinking his Autism is a germ like Daddy's cancer germ.  She did say that the boys would probably need to be reminded of the information today over and over again.  She told them that they were so smart and knew so much about germs and she also told CJ that there are many dr's and scientists that were trying to come up with that pair of pliers to get rid of cancer germs from people's bodies but they just haven't gotten it right.  She told him to keep working on his idea and when he joins them when he is an adult, he can dedicate the cure to Daddy but in the meantime to love Daddy and help Mommy take care of him as best he can.

She recommended a book for me to read to them and I checked Amazon and it was there so I ordered it for them.

All in all today's visit went well.

Boys Grief Counselor to visit today

So The Hospice Child Grief Counselor Ms. J is coming today to meet with the boys.  I hope they are comfortable with her enough to open up to her like they open up to me.  The good news is she is willing to work with the boys Wrap Around Team in order to support them through all of this the best way we all can.

Pita's bedside commode, urinal, walker and gel foam memory mattress was finally delivered yesterday evening and he seems more comfortable in the mattress.  He hasn't used the urinal, commode and he doesn't even know about the walker just yet so I don't know if he will EVEN use the walker.  He should because he is quite wobbly and can get very confused often enough to warrent use of a walker.  I will bring the walker up to him sometime today and see how he feels.  It may take him time to warm up to it same with the commode and urinal. 

I know what his issue is right now.  He still wants to be in control of himself so he is choosing NOT to use the medical equipment that we got him for ease and he is slowly coming to terms with the fact that he is quickly losing control of himself.  We have to give him time to come to terms with his loss of control on his own.  Unfortunately that may take a very long time.  I can imagine how difficult that would be for anyone who is in total control of EVERY ASPECT of their life to suddenly NOT have that control and it's not only a physical adjustment for them but more so a mental one as well which is worse then physical for them.

He continues to decline mentally.  Now referring to himself in the 3rd person, can't form full sentences or hold a conversation without getting confused, has difficulty remembering the kids, thinks we have more kids then we have and suffers from short term memory loss.

His physical declines continue as well.  He suffers with continued extreme weight loss, loss of appetite with little food or fluid intake, his complexion is totally off almost as if he has a yellow tint to his skin, he is extremely weak and always suffering with excessive fatigue, loss of balance and his equal librium is off.

In some strange way it is getting easier to care for him but still extremely difficult to watch him decline so rapidly.  I have this feeling deep inside me that he may not be with us for Christmas which is 63 days away!

10 Happy Faces vs. 5 Sad Faces!

Some of you know that my husband is a Stage 4 cancer patient but some of you may not know that we also have 7 year old Autistic twin boys that are in the 1st grade.

When the boys started 1st Grade CJ came home with a letter from his teacher explaining the rules of the classroom, supply list, prep and gym days, student expectations and parent responsibilities and such and so on.  One of the classroom rules was that ALL students that get 10 happy faces on their monthly behavior report WILL be able to participate in the monthly birthday celebration at the end of each month!!  AWESOME, now I have something positive to work with here!!

Yesterday he brings home a notice that says ALL children with 5 or more sad faces in their monthly behavior report will NOT be able to participate in the monthly bithday celebration at the end of the month and they will also NOT be able to go on the scheduled field trip that month!  WTF is up with that??

So I call the school today in an attempt to talk to the teacher and she was in class so I left a message for his case manager (special ed teacher) Ms C.  She calls me back and asks what was up so I tell her....

I have to say something about this new rule...I think it's wrong.  Here is what the teacher now did..follow me if you will...

You told him at the beginning of the year that "if you get 10 happy faces you could participate which is very positive."  Now you are telling him "BUT if you get 5 or more sad faces, regardless of how many happy faces you have, you WILL NOT be able to participate!"  We are talking about an Autistic child who is watching his father die every single day essentially and he feels it's his job to save his father's life!  Not to mention that CJ works 2 to 4 times as hard to be 1/2 or AS good as the other kids in that classroom!  So now what you have done is taken his positive away from (10 happy faces) and TURNED HIM COMPLETELY AROUND and said "but wait 5 or more sad faces it's a no go!!  You're PUNISHED!"  which is NEGATIVE!  So instead of him focusing on positive, he is now turned completely around and focusing on the negative which is NOT GOOD for CJ! 

I understand why the teacher is doing this but come on....isn't that a bit extreme???  We're talking about a 7 year old Autistic 1st grader that walked into that classroom with some minor behavioral issues that are CLEARLY in his IEP AND he is watching his father die right before his eyes so now we want him focusing on even more negative???  Does that make sense, not to me it doesn't!!

After we went back and forth a few times I asked if there was another consequence we could come up with for CJ and not a PUNISHMENT that he won't be able to participate in the parties because his father is dying!!!  Which WE ALL know is how CJ will think!  Needless to say it's in the process of being handled...I hope to have better news on Monday.

My day so far...

Woke up at 6:05am and attempted to go back to bed with no luck!  Heard a loud THUD and CRASH at 6:15am and FLEW up the steps.  Checked the boys and they were fine!  Turned and looked down the hall and the house was still dark.  Walked down the hall toward Pita's bedroom and turned on the hall light then the bathroom light and looked in his room and the bathroom and that's where I found him laying half in and half out of the bathtub.  I immediately helped him up and he yelled at me a few times "I'm ok and I can get myself out of here" stuff like that but I insisted on helping him out because he obviously wasn't able to get himself out of there himself. 

As I was lifting him he was wimpering "Mommy, I can't, Mommy, I'm ok, Mommy I can't even go to the bathroom myself."  I hugged him and kissed his head and he finally went to the bathroom and then I got him in bed and he asked for a cup of tea.  I went downstairs and called the nurse.  They said they are going to send someone out to check for further injuries.  Made him his tea and brought it to him with his meds and Ensure.  Got the boys up and fed, dressed and out and I finally was able to get my shower. 

That's when I saw the damage to my shower.  There are now cracks in the walls that need to be fixed or the walls need to be replaced.  There is a huge crack over the shower head because the shower curtain rod came crashing down and it's force tried to take the wall with it.  All I have to say is THANK GOD it wasn't a tile tub and shower or he would have been a bloldy mess!!  He most certainly would have obtained more injuries then he did!!

Took my shower as best I could trying to not get water everywhere which is almost impossible to do, checked on Pita once more and he is ok.  I am now waiting for my pants to dry in the dryer so I can take a quick run to the bank so that I can get some cash for a space heater, 2 new ceiling fans with light fixtures and a night light for Pita!!

I hope there is NOT a head injury!

Quiet day today.

Pita had a very sleepy and quiet day.  He slept til 3 o'clock this afternoon...Mr. Lazy Bones!!  LOL

Anyway he ate half a turkey and swiss on potato bread sandwich and drank a glass of milk and now he has love in his tummy.  The home health person came today and basically watched him sleep for 2 hours.  lol  At one point he said to her "why don't you go downstairs to have a cup of coffee with my wife and get the hell out of here so I can go back to sleep!!"  I was CRACKING UP!!!  Mr Feisty is making a sudden return!!  Poor man is so tired, he spends most of his days sleeping.  I often wonder what or who he is dreaming about.  He has now started referring to himself in the 3rd person.  He told me the other night "I wanna lay down but this guy Chuck just wants to go to sleep!"  I told him to lay down if he wants and to let Chuck go to sleep if he wants.  I don't know what that means exactly but he was happy that I just went along with him.

Cub Scouts with the boys tonight and after that I will check on him and give him his meds and if he wants a little something to eat I will get it for him.