Crazy is as crazy does…

I want to cry…

I want to throw a fit…

I want to throw SOMETHING …

then I want to cry some more…

We met with 2 of Sam’s teachers last night and that is how I felt when we left the school.

One teacher seemed to ‘get it’ to a point with what we were telling her- Sam just needs some extra help with organizing his work, to stay on task and to get work done. He DOES NOT need to have things made easier for him (meaning he doesnt need his work ‘dumbed down’ for him — for lack of better terminology). The other teacher I am not sure understood what we were trying to do for Sam. I felt like he thought we were babying him — in other words there is nothing wrong with him ‘really’. The teacher commented that if it were his child he “wouldnt think twice about having him at school 5 days a week and give him a ‘spare’ once a day’. I wanted to explain to him (to ‘dumb it down’ for him) that Sam needs the one day at home for REST and one period a day AT SCHOOL is not rest for his brain. For one, when he is behind in something teachers would take that ‘spare’ and use it for him to get caught up (no rest…) or, two,he would use it to play on computers or  his iPod (no rest…) since he IS still a teenager!When Sam is at home on Wed. he is doing nothing but laying on the couch to rest his brain! (There is no computers, video games or other things that will cause his brain to work over time!) This is a teacher that has just gotten Sam in is class room (new semester change) and I am sure hasnt read any of the literature that I gave the teachers.  And we ARE working on having Sam back to school 5 days a week in April and take one Wed. off every 2 weeks (this was on advice from the NEUROLOGIST!) I also had to explain that this brain injury could take YEARS to heal– it is not ‘better’ just because the scar is healed up on his head.

We did finally settle on some things to help Sam with the classes. In Social Studies, he will work on daily work and have open book tests (so there is no stress about studying for him). In Math he will work on his booklets and some work in the text books and he will be checking in with the teachers when things get confusing.

It was very hard explaining Sam’s behaviour with him there too. I had to say things that were embarassing for him to have me say to the teachers but it needed to be said so that they could understand… I hope and pray. I had to tell them about his reverting to immature behaviours when he is overwhelmed or when his sensory overload kicks in — but I wonder if they got it or if I was making excuses for him. I honestly dont know if they get that he has a BRAIN INJURY!

I was trying to get across something that I have been telling people(not just teachers) since the beginning about organization in his brain and life and the other day I finally got how to explain it that HOPEFULLY people would get (and not always make me feel less with ‘well he IS a teenager and that is normal’ attitude) It was this: YES he is a teen with normal teen issues and YES most teens are not overly organized or together with school BUT the big difference is that eventually 95% (or so) will EVENTUALLY get it together! If Sam doesnt learn now how to do that his brain will never learn as it is still healing and needs to learn how to reroute his thought patterns NOW so that he can have those tools for later in life.

I did send some YouTube videos out to the teachers and the school division that had a lady with a TBI and she explains things in suc a way that I never could (she and her videos can be found HERE) Te hope had been for the teachers to watc the videos BEFORE we met with them but apparently the internet at the school is slow or something and they were unable to watch them but another teacher did manage to watch them and said that they helped to to understand what Sam (and us) must go thru! (wehavent met with this teacher yet–this semester) .

I wish people could understand that we are doing what we feel is best for Sam, that the doctors dont even know exactly what to do or how to deal with this as he is doing so much better than expected. So here I sit feeliong like I am going crazy with Sam and maybe I am not doing what is best for him. Maybe I am screwing it all up and making life worse for him, I dont know anymore! I feel so horrible to even THINK that maybe it would be easier if he were worse then at least people would SEE that there are issues. I once told a friend that I was actually jealous of her with her son (he had cancer) because people just took everything they were going thru at face value– just that … while we are fighting to get one or 2 people to understand the frustration that we go thru on a daily basis! People will accept things of people with diagnosis’ that are more prevelant in the media or in thier lives than they will with ones that are seemingly less so– if only they knew how “common” Brain injuries are!

After our meetings and other appts. we dropped Dennis off at his car (he had a meeting last night) and we drove home and let me tell you that was not a pleasant drive. Both Dennis and I could see the change in Sam as we were with the last teacher. His whole demeanor changed and I knew I was in for a night and once in the car so did the other kids. No sooner had we walked in the door of the house and it started. The other 3 kids knew Sam was in a mood so immediately they were on the defensive and that started a well versed production in our lives. Once everyone had chores done and dinner on the table I had it out with them and trying to get things back to a respectful level. It was 8.30 before things were ‘right’ with the house…

I think I need to get back to writing more frequently on here again. There is just too much to put into one post without feeling like I am rambling or babbling….

I had hoped for a different posting this week but apparently it will wait for another day.


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