Lately I have been having more and more feelings of frustration and failure. I am tired, frustrated that people (teachers, doctors, family, etc) dont get what life is for us now. No one sees that Sam is different or if they do they write it off to "teen-dom" or attitude. It is maybe a bit of both in a very small way-- but for the most part it is BRAIN INJURY. I feel like I need to get Sam a shirt that relays this message all the time. When he has an 'attitude' a small correction of "Sam you need to check your attitude." or "Sam do you need to rest?" and usually (like 9 times out of 10) he will says "Ok" or "Yes". And probelm is usually solved. Instead I get people who say "Sam! I dont want to see that ---- or hear that ---- again! You need to grow up !" (fill blank in with an attitude or an action) They dont see the behaviour as a result of his fatigue or need for a self check. Sam is in denial most days that there is anything wrong with him (not that there is something wrong-- but more that he needs to relearn things)
Maybe i dont explain it right. Maybe I am going crazy. Maybe I am over compenstaing... but then wouldnt things be moving in a different direction!?
I dont know what to say or do anymore. I send emails of info constantly to school, to family and home to read and learn more (and hope that someone will see what we are talking about!) but so far ... nothing.
I am not trying to make small or anything of cancer patients or say that i wish Sam had cancer... but one thing that they DO have is that cancer "acceptance" is out there. People will help when they hear cancer, people know about it and if they dont quite understand it , they WILL educate themselves about it. People understand that cancer affects the family too and that they are in it for the long haul. There is hundreds of support groups for cancer patients, survivors, family and friends of them too. There are walks for it, charities for it and there is a worldwide understanding for anyone affected by it. With TBI there is nothing! It affects just as many people as cancer but there is nothing there to help survivors or families.
TBI can be as 'small' as a concussion or as 'large' as complete and total brain damage yet there is very little support out there for us. It is incredibly hard to explain to someone how hard it is to deal with if they dont see anything wrong! Since Sam's accident was 'self inflicted' there is no help finicially for anything (small things like braces to aid in apnea or now his possible teeth troubles, or for a PDA or Ipod to use for school work organization) There is no group to go to for kids that will help us to be a support to other parents who are going thru the same kinds of ordeals. I know we live in rural Manitoba but there has to be something! We have to deal with schools, teachers, employers for jobs, doctors, nurses, families, communities... there should be something out there for us! But so far there is nothing for children with Brain Injuries. I have yet to have a doctor tell me what to expect with his injury. ANYTHING! They all say "he is doing great" after seeing him for the first time for 5 minutes. Yes he is ... when it comes to holding up his arm level, watching a pen or a light, answering a few questions of a simple nature... but to really know how he is doing shouldnt they be seeing him more and actually LISTENING to what I am saying!? We have seen countless doctors for an almost seemingly endless list of things... and all of them we see ONCE so how do they know? Why dont they actually answer my questions, give suggestions, write the needed letters to the schools for us!?
I am tired of fighting. I am tired of feeling like I am failing Sam, tired of making everything seem like it is rosy here. Tired of the fights to get things -- simple things-- for Sam that should be there for him. Tired of telling people that he is doing great physically but then having to explain the mental part and the relearning part and seeing on their face the look of "huh". What if everything I have been doing these past months is all wrong!? What if he needed something else and I missed it? I am just tired, frustated and feeling like a failure... i just dont know what is the right thing for us to do with him anymore. What if we have been wrong all along?