If you were wondering about Triston...

we made the best choice for school this year (not that Farnworth wasnt amazing! We just needed a full-day program for this brain of his & I just could not be one of the teachers in his class. Not fair to anyone). I was confident in our decision by the second week of school. This was meant to be. Not only are they more than understanding, compassionate and assistive in our situation BUT boy is he being challenged. Here is one of his Art lessons:A piece depicting the painting style of Pointillism (very small brush stroks w tiny spots of color), a method used by Georges Seurat in his painting A Sunday on La Grande Jatte. They learned that tad bit of info then used the method to paint their pumpkins.

First day of school

Fall school pic

If you read my recent blogs then you recall my rantings of a tough school week for T last week. Since then with the help of ACTUALLY being home, I have been able to assess the situation and his behaviors first hand. I just spent Saturday observing him and lovey dovey-ing him. I would say every 4o min or so he would come and hug, kiss or tell me he loved me. When we talked on Sunday. He shared he was scared and lonely and he missed me. We talked about how it is okay to feel confused and frustrated but NEVER ok to hit or touch a friend at school. How many of you just read that sentence and went " What?! Hit?! Triston?!" ? I KNOW RIGHT?! Not like my T at all. But after seeing his behaviors at home ( and my spec ed and OT friends will like this one) he was way out of whack! He was so jumbled. Even his sentences and thoughts were coming a mile a minute and you wanted to just grab him and make him step back a minute and take a deep breath. So hard to watch that coming out of such a confident and independent boy. It was only a matter of time when all of this caught up with him and last week he hit his own wall. It was very clear to me he was on overload. He was both internally and externally distracted, inattentive, his emotions and activity levels bounced all over, and he demonstrated difficulties regulating himself. It was like he was ready to explode with all the things going on inside him. I didn't blame him. But this is where Charito and I deserved our reality check. Yeah, we would have preffered the inappropriate behaviors to occur at home vs school but we were not the ones hurting that week. He acted out when his body felt the need to and there was no control over that in the moment. We take so much pride in his successes and things that come so easy for him. Intellectually it is like we are living with a 7 yr old and we forget that he is just as fragile as we are during this time. Emotionally he is still a 5 yr old dealing with events he shouldn't have to but must. I had to think like a teacher, mom and a 5 yr old to wrap my head around it all. He needed us.

He and I were way overdue for a date nite ( we were supposed to go in October and pneumonia took over and then Nov has been full of hospital stays so far) so I told him that was our plan for the day. Then it was not until that morning that I was able to get thru the mail I had missed while I was gone. Irony! In there was our first packet from SUPERSIBS!!! What timing! www.supersibs.org An organization dedicated solely to the siblings of patients w cancer. Aerum signed me up for it about 2 weeks ago. I flipped thru the packet and it was full of goodies all for him. A bracelet, stickers, magenetic feelings chart, workbook and story letter personalized from a fellow supersib himself. The letter happened to be a photocopies mass production from a boy named Spencer. T read it and now thinks this boy is his supersib companion. He tore through his kiddie packet with so much excitement. It was encouraging to observe. I immediately used the parent packet by clipping one of the "coupons" for a movie. I filled it out-

To: Triston

From: Mommy

Reason: Because you are loved, too!

He read it and that smile of his lit up! It was exactly what he needed. We went to see Megamind. Afterward we stopped at Officemax for him to pick out his own journal for home use. I explained to him that when he is feeling frustrated or crazy inside he can draw about it in his journal. His teacher was setting one up on Monday for him as well. Triston has always loved to shop so he was thrilled to pick up other little goodies to make his journal special. We had a great time. And once we were out and about or even sitting in that theater I saw my T shining through. The calm, well-behaved, happy, polite, affectionate boy we raised was still in there. He just needed the time and place to take a breather and escape it all. I did, too.

That evening he drew in his Feelings journal. He drew how he felt when I was gone and how he felt when G and I returned home. He has recently used the words sad, scared, lonely, frustrated, and confused ( and any new ones he is reading off the feelings magnet from supersibs). We talked about how it is always ok to feel that way. We cried together, sharing how it scares us both. How neither one of us likes how crazy our house feels. How we don't have the same schedule all the time. It changes when G has to be in the hospital. But I promised him we are trying to make our house feel safe and love is always there for him. For all of us. My lil boy cried in my arms and I cried with him. He needs to know I am feeling the same way he is and most likely as often as he is. I told him how proud of him we are. Proud that he was a good boy while I was gone (at least at home for the Lulas and Lolo). From what I was told about his afterschool actions he was pretty robotic about it. He followed his usual routines and laid low. Proud that he was thinking of his baby brother Grayson and called him several times that week. I told him Grayson missed him, too.

After I was able to gather my thoughts about T I emailed his teacher. Her emails during the week described how he seemed more impulsive than anything else. When asked why he touched someone his response was "I don't know". I truly believed he didn't know, as did she. He was also trying to control situations like board games-innocently trying to aid a friend to win but when the friend would not listen he would hit or take away a game piece. I know his mind-he probably saw the best method to win the game and wanted to help that friend and when his suggestions were not put into place he got mad. Well, buddy, they have to figure it out for themselves even if you have already. He appeared frustrated with a mix of feelings and was reacting w a hit to a friend or unkind words. How else was he to describe the buffet of emotions that seemed to overflow on him that week? It also appeared he was trying to control situations in the classroom. She was so understanding in trying to figure him out and confirmed we would tackle this together. We agreed on the Feelings Journal as a place to approach her and vent before he made a bad decision and "hurt a friend on the outside or the inside". I had even talked to him about it on Thursday nite and Friday he did much better. No hitting. And by Monday he walked away from every frustrating situation and went right to his teacher. They even put an entry in his journal. I was so happy he got it so quickly. I wanted him to understand that his teacher knows how he is feeling and it was ok to talk to her about anything.

My most recent emails to his teacher dealth with what I was able to observe in the first 24 hours of being home (as described above). I shared with her that it was clear to me he was overwhelmed with all of this. We agreed that it was school situations (situations that presented an opportunity) for him to try and control. And why not? My life feels out of control so I am gonna try and control what seems tangible at the time? Exactly what any preschooler should attempt when feeling out of sorts. What was there to try and control at home when he pretty much came home, peed, washed hands, changed clothes, did homework, ate snack, played and watched tv til daddy time? I told her we had every intention of attempting a normal routined week each week we are "off " from the hospital. I shared that we vented and I think it made a big difference in teaching him he is not alone in any of this. He obviously needs his own "breaks" built into his weeks now (especially during this phase of treatment with the every other week on and off from the hospital carrying us to January). And thanks to Alysa he will have visits with them as often as possible. And I cant tell you how much that means to me-a piece of his past, a more calming, reassuring time in his life that he can get a bit of weekly. He needs that. I would love to classes of some sort but it is not fair to him if all hell breaks lose and we cant go to a class. How disappointing would that be to him. I am going to setup ice skating lessons with a long-time friend of ours. I know she would be flexible enuf to fit us in at a moment's notice (which is how we run things these days-just call us the Can't Tell One Minute from the Next Carpers) . I set up his calendar with the weeks we should be at the hospital so he knows what to expect, NOW that I can almost prepare for this kind of stuff as opposed to last week's surprise hospital stay. I told him it may be different people watching him until daddy gets home but it is always someone who loves him. We would try visits for him to the hospital as well, as long as G wasn't in isolation. I just reassured him that it November and December are going to feel crazy inside but we will get thru it together.

T was still so ecstatic over his supersibs materials that he insisted on bringing them and his home journal entry to show his teacher. This made him feel special and IN CONTROL. It was already doing it's job...and to think he will continue to receive packets for years to come which are personalized to the stages of treatment or phases of emotions he may be encountering down the line. Which is exactly how I channeled his energy levels over the weekend. I saw his need to keep busy or lay low. When he was running high I put him to work. He wanted to help with the groceries like always but this time he wanted me "to relax and he would take care of it". I let him. Another opportunity for him to have some sense of control. It took him 4o min but he did it. Sifting thru each bag and running around the house sorting items in that room or this cupboard. He was having fun. He was his usual helpful self and IN CONTROL.

Since our talks there has seemed to be a relaxed sense about him. I give him plenty MORE chances than ever to help me out during the day. To make him feel like he is a part of something, not someone being tossed to the side while we fix his brother.

Charito and I have talked about how next week will effect us all. G and I are sceduled to be at the hospital Monday. If pattern repeats itself we are not home until Saturday or Sunday. Luckily T has no school Wed-Fri. Monday is his Thanksgiving celebration at school at 11 am. I asked clinic if I could come in around 1 pm as not to miss T's event. I figured what difference does it make if I had upstairs to be admitted for the rest of the week anyway. No hurry in me getting there at 9 am when I m not going anywhere, right? So I am going to head to his celebration and then pick up G and the 3 of us will head to the hospital. It has been awhile since T has been there and I think it would help him "know where we're at" if he sees how the process works on these type of Mondays. Let him see how it's like the clinic he recalls but then I wait to hear if Kwon or Goodell say we "have to stay". Let him see those procedures and have that mental picture of what these terms we have been using to describe the beginning of these stays plays out like. I am also going to make him a book w each person's pic. He has met "Grayson's people" several times but a character and location book may be helpful.

So that is Monday. Mamac will stay with Caden and I will have G n T with me. Daddy will head up to the hospital after work to get T. Then Auntie Mimi will stay overnite and care for T n C Tuesday and Wednesday. I just have to work the finer details for attending T's parent teacher conference Tuesday afternoon. I am just going to cancel my dr aptmt Wednesday and reschedule for following week. Then we hope to have a some type of lil Thanksgiving on Thursday at the hospital (heres hoping he isn't on isolation or it will be a lonely Thanksgiving for G and I). Our friend Laura dropped off some turkey decor that I am saving for T to help decorate G's room on Monday. Let him feel like he is contrbuting to G's room and taking ownership over the situation. The rest of the week we will figure out along the way.

As a side note, now T seems to think supersibs is a place for him to go during our "on weeks". He said to me last nite-"Mom, I need to pack a bag like you for Supersibs. Can you take me there? Do you need the directions?" I tried to explain that it is not a place to visit but a place for him to write letters and get mail from supersibs friends. That is when it hit me! He wants to feel like there is a place for him to go like G has a place to go. We talked about how Aerum will tell him more about Supersibs at the hospital and anytime he wants to be with G or I Aerum can get activities together to make him feel special at the hospital, too. I appreciated his thought process. It was both endearing and saddening. He was trying to figure out where he fit in all this.

I hated that feeling I had when I first read and heard of T struggling and with all my might I could not come up w a strategy. I got so consumed with the present, or G, or the next fire we had to put out that the teacher files in my brain could not be accessed. It was frustrating. I wanted to run to him and hold him so tight. To fix it all so quickly and I couldn't. I have my students' parents vent their issues to me all the time and as they do ideas just flow like crazy, so much that I have to pick which one to try first. But for my boy I had nothing. I had the help of Child Life to talk things through but I still felt like a failure.

It was not until I saw him in action when I returned home that it was so clear. Someone flipped that teacher switch. He was struggling to balance life, school, "work", hardship, affliction, adversity, uncertainty and untapped feelings just as his daddy and I were. I can't help but wonder to what degree each of us will be both tainted and strengthened by Grayson's condition years from now. Will Triston need therapy? Will Grayson? Will I? Will Charito? What other related services with Grayson need to get through school as best as he can? How much will Grayson remember? Triston by far will remember and experience so much. Will Caden just go with the flowon his happy bus of life and simply read of these unsettling events in our lives? I don't know, but I think about it often. How will each one of us turn out bc without a doubt nothing will ever be like it was. We can only move forward and make the best of what is new.

Well, whatever any of that means I am proud to say that this week has been a great week thus far for T. He is happy to have us all under one roof. He wants to help with everything and his new chores include feeding Caden and being the main operator of G's nebuelizer. My right-hand man. He continues to be the most delightful big bro...and passing on this tricks of the trade to the other big bro:

Using his tools to fix the swing!
And guess who doesn't mind all that attention!