Don't you just hate it when you are treated like you are not 'intelligent' enough by someone, or that you do not know what it is you are talking about--especially when you not only KNOW but LIVE the very thing you ARE talking about!?
I mean when I tell someone about TBI issues that are happening to my family members and in my house I would think that the person I am talking to would understand that I KNOW what I am talking about! I am not Joe Public that maybe has only HEARD of TBI, I am not a person that is on the outside of it looking in... I am LIVING it every freaking day!
And not only with one survivor but THREE! Yes people, three! I have done so much research and living with a lot of issues that survivors deal with! I am not an IDIOT about this stuff! DOnt try to demean me or my observations! I know when things change and what that will mean to each survivor in my life!
I KNOW what that will mean in MY life! I know what needs to be done to try to get the person back to a normal balance -- whether it be a change in physical position OR mental position OR more sleep OR a change in what is normal for other people without a TBI!
On a daily basis here I deal with 2 survivors and I know each of their moods and idiosyncrasies. I know that one is a teen and that he will deal with normal teen issues BUT he also has 3 small metal fragments imbedded in his brain that have severed nerves and destroyed some normal brain patterns-- but I LIVE with him and know the difference between 'normal' teen behaviour and TBI behaviour!!! Sadly, they are so closely linked some days that a lot of people will tell me that n"oh its normal for a 14yr to do that!' but please be rest assured that there is more to it -- that there is a distinct difference that maybe can only be seen to be understood.
Sam has been sundowning this week and it is VERY noticeable here at home. He is such an Oscar Awarding Actor at school that no one sees it. But rest assured that when I tell you that there is something wrong then PLEASE believe me and don't make me feel like a schmuck and try to belittle my observations-- not just mine but Dennis' too! Please don't think that by saying it is 'normal' teen behaviour that you are in any way making me feel better.
You make me feel stupid, insignificant and useless. I know you are the professional but I am the MOM!
I am the WIFE and I am the DAUGHTER!
I am the person that looks after them.
I am the person that looks for methods to help them to get as close as possible to the person they were BEFORE their TBI.
I am the person that sits with them and listens to EVERY word that they say and DON'T say about what is happening in their heads!
I am the one that holds their hand, cries with them and for them!
I am the one that loves them TOTALLY UNCONDITIONALLY!
I loved them all BEFORE and AFTER their injuries and I will love them for the rest of MY life!
I will be their biggest advocate when they need one.
I will just be whatever they need WHENEVER they need.
I will just be....
Please don't make my concerns for their well-being to be small or insignificant just because YOU have gone to school for years, have read an article on something, have letters after your name, you work with 'normal' teens or feel that you KNOW better just because.