wasnt that a TV show!? (LOL for those you who really know me... I love 70's and 80's sitcoms)☺
but that is our motto in this house!
As I sit here typing this out, our Sammi is upstairs sleeping in our bed (we have a tv in our room) with a fever, sick stomach and vertigo. It is his normal day for staying home but today he is sick. I have had him up and in a cool shower, gave him Tylenol and sent him back to bed. He white as a sheet and looks horrible. I always get worried when he has a fever since we have to be sure the fever doesn't go to high and trigger seizures. (never have had one yet but the doctors still tell us to be very careful with them).
Last week on Tuesday he came home from school fatigued. White, slightly limping and his left side ever so slightly drooping. It took until Monday for him to 'get back to normal'. Then he came home last night feeling sick and just blah. So i wonder if it wasnt starting last week and finally hitting him now... who knows.
Sam and I had a great talk last week and he has decided to have the plastic surgery done on his head. This will be a metal plate put in to cover the 'hole' where the bullet entered. I was shocked when he told he that this was what he wanted to do AND that he had been thinking about it for quite a while now. He says he is bothered by the way people will watch his head and not look him in the eye when they talk to him (usually this means his friends). Around the entry wound area is not only a long scar but the 'hole' and a person can see his heart beating there and it will pulse or bulge when he is stressed or there is pressure from straining. We had told Sam (from the beginning) that this would be a decision up to him alone. It is him that would have to live with the scar, the 'hole' and whatever else is involved, and we have never brought it up again. And his reasons for wanting to do it make sense to me. He is a teen and wants to not be different. But there is more to it... kids are also asking to touch it. This is one thing that distresses me! Sam has said that he didn't mind at first but now it is getting to be too much. So we have talked about it, and I have called our TBI co-ordinator (Gail) and am waiting for her to call me back to see how we go about getting a consult and with who.
Sam lately has been having episodes of vertigo. He will get dizzy when sitting then standing (which is normal for a lot of people) but he will also get dizzy when walking, standing AND while sitting! So I hope to ask Gail about this too. I know it is normal for a lot of survivors but it doesn't hurt to just double-check. We have told Sam that he needs to be aware of when it happens and what happens b4 he feels the full effect of it so he can know while riding a bike or climbing up a ladder, etc. to get himself in a safe position.
He is still having stomach issues to the last while. Meaning his stomach will physically hurt, then he tends to lose his appetite. I havent found much info on this so it will be another question for Gail.
Once again our lives are taking a turn and things will be very different around our house, but for now I will leave it for a future date to talk about! BUT we did sell our house and as of tomorrow (Mar 25) it will no longer be our house! YAY!!! Thank you Lord!
My blog will be under construction the next little while as I get used to the new formats and get the right background and widgets on here. I need to transfer over the info from the old blog once all that is in place! If there are any ideas for here please let me know!
Wednesday, March 24, 2010
Tuesday, March 16, 2010
Boy oh Boy! When you go to bed at 11 and are up at 5 the night just doesn't seem long enough!! Dennis and I took Sam to the Brandon meeting last night and had a good talk on the way home with him. He really enjoys going and learning that he isnt alone in this-- that there are others out there that 'get him'! There was a discussion about the P.A.R.T.Y. (Prevention for Alcohol Risk-Related Trauma in Youth) (please click on link to see the idea behind this AWESOME program!!!!) and that it is going to be in Brandon and one of the caregivers thought that it would be awesome for Sam to be one of the survivors to speak to the teens of what it is like to survive AND live with a TBI since he is closer to their age. We had talked to him about it but at this time it is too early for him to talk about it. He needs to learn to live with it himself before he shares his story to strangers. But I asked him to think about it for something to maybe do in the future.
We only have 2 Wednesdays left of Sam being at home!! YAY we are both excited about this!! Sam is really tired of being at home (or maybe just tired of me or not seeing his girlfriend... lol who knows-- but I am willing to put money on both!☺) I have spent more time with him than probably all the other kids...so it is coming to be a time to start making more them. I have always tried to spend time with each of them each week just one on one, but lately with Sam and the moving to the new place and Dennis being in town with who ever had a sport or activity (which had me here doing battle with homework, the house and chores) I was tired both physically and emotionally. I have to be honest here and say that there have been times where I would tell a child I was too tired to play a board game, read a book or even just talk. (man what a way to win bad mommy of the year!) But now it is time to get back on track and get back to basics with all the kids individually and as a family, for some fun stuff!
On a quick side note of Praise... after I posted on the blog yesterday (about an hour and a half later) I got 3 (yes that is THREE) emails from teachers! When I sent this email out this week, I asked for school work and I commented how we were grateful for their help with Sam and that we really notice a difference in him and his work when we are able to keep him organized! So whether the 'thanks' was it or whatever, I was so happy to see them hit my inbox!
We only have 2 Wednesdays left of Sam being at home!! YAY we are both excited about this!! Sam is really tired of being at home (or maybe just tired of me or not seeing his girlfriend... lol who knows-- but I am willing to put money on both!☺) I have spent more time with him than probably all the other kids...so it is coming to be a time to start making more them. I have always tried to spend time with each of them each week just one on one, but lately with Sam and the moving to the new place and Dennis being in town with who ever had a sport or activity (which had me here doing battle with homework, the house and chores) I was tired both physically and emotionally. I have to be honest here and say that there have been times where I would tell a child I was too tired to play a board game, read a book or even just talk. (man what a way to win bad mommy of the year!) But now it is time to get back on track and get back to basics with all the kids individually and as a family, for some fun stuff!
On a quick side note of Praise... after I posted on the blog yesterday (about an hour and a half later) I got 3 (yes that is THREE) emails from teachers! When I sent this email out this week, I asked for school work and I commented how we were grateful for their help with Sam and that we really notice a difference in him and his work when we are able to keep him organized! So whether the 'thanks' was it or whatever, I was so happy to see them hit my inbox!
Monday, March 15, 2010
New Address
Yes, I have moved the blog! I was not happy with what I could do at our 'old' place and I like the way that WordPress gives me more options! (just what I need!)
Well I am soooooooooooo happy to announce that our house in Neepawa is SOLD! YAY! Thank you God for sending the right people to buy our home at the time You felt was best! (I am in that hindsight frame of mind right now... ☺) So in a way the new address is for more than the blog!
Tonight we are off to another TBI meeting. This is the one in Brandon that Sam likes, but the real reason for us going is so I can share the information on the TBI Conference in April. We will take Sam to these meetings once in a while but due to distance and the fact that we feel that he will get more out of the Dauphin group once he gets more comfortable with them we will go to the Dauphin meetings more regular.
I have busy, busy again last week getting things in order for what I need to do to help with the awareness for the conference. I have a few people in mind to talk to and see about things, I have many posters made to put up, brochures to hand out and people to talk too! I can't wait til Thursday when I am going to town to do this! (i have spoken to most of these people already ... but just getting out and face to face spreading the word of TBI awareness... thrilling.
I sent out my emails this morning too, to teachers about Sam's weekly school work and so far no replies to the email. I was told by the school division to send the emails to the teachers, that they would reply fairly quickly. I know it is only Monday afternoon but I sent out emails last Monday and really only got one reply. I put a read receipt on the emails and very few of them have come back either\(or an acknowledgement that they read the email!!!)... So I will wait and see this week, then I will go to the next step (not too sure what all that is right now tho)
Well I am soooooooooooo happy to announce that our house in Neepawa is SOLD! YAY! Thank you God for sending the right people to buy our home at the time You felt was best! (I am in that hindsight frame of mind right now... ☺) So in a way the new address is for more than the blog!
Tonight we are off to another TBI meeting. This is the one in Brandon that Sam likes, but the real reason for us going is so I can share the information on the TBI Conference in April. We will take Sam to these meetings once in a while but due to distance and the fact that we feel that he will get more out of the Dauphin group once he gets more comfortable with them we will go to the Dauphin meetings more regular.
I have busy, busy again last week getting things in order for what I need to do to help with the awareness for the conference. I have a few people in mind to talk to and see about things, I have many posters made to put up, brochures to hand out and people to talk too! I can't wait til Thursday when I am going to town to do this! (i have spoken to most of these people already ... but just getting out and face to face spreading the word of TBI awareness... thrilling.
I sent out my emails this morning too, to teachers about Sam's weekly school work and so far no replies to the email. I was told by the school division to send the emails to the teachers, that they would reply fairly quickly. I know it is only Monday afternoon but I sent out emails last Monday and really only got one reply. I put a read receipt on the emails and very few of them have come back either\(or an acknowledgement that they read the email!!!)... So I will wait and see this week, then I will go to the next step (not too sure what all that is right now tho)
Friday, March 12, 2010
wishing I could take these mitts off...
I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today. As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!" now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.
Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND b.) be going home.
I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?
The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him). Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with. Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are 3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).
Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)
I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...
Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND b.) be going home.
I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?
The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him). Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with. Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are 3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).
Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)
I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...
wishing I could take these mitts off...
I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today. As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!" now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.
Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND b.) be going home.
I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?
The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him). Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with. Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are 3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).
Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)
I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...
Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND b.) be going home.
I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?
The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him). Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with. Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are 3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).
Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)
I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...
Thursday, March 11, 2010
3 men and baby?!? um no just me
I have been wanting to post this for a while now but due to other things happening (both blessings and not so much blessings) I seemed to put it off more and more. But today I thought I would sit and spend the next day or two getting it all (or as much of it as I can) out and on here.
My Sammi.
He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best.
The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!
My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%) things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness.
TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.
So please indulge for me for a bit while I tell you about 3 (of the 5) men in my life that are my blessings and my cause for many tears, of both happiness and frustration!
First is Sam.
My Sammi. He was my biggest baby at 8lb 13oz and from there on was at the low end of the birth rate scales -- now being my 'smallest' (extremely lean and thin at 5'8" and just barely now 123lbs). He was my quiet baby that would grunt softly for feeding times and he loved to snuggle with me. He was 'my' boy just as Josh was 'dad's' boy...
As you know this blog was started because of an accident that he had on July 29/08 with a .22 calibre rifle that accidentally discharged and struck him in the head -- resulting in a TBI (Traumatic Brain Injury). At this moment in life ( and I am SURE forever) he is my constant reminder that God DOES perform miracles and we should look for them everyday but he is also a reminder that God allows things to happen so He can work thru you, so that other things (maybe another miracle) can happen to someone else (or even yourself!)
Our home usually has daily drama that has occured from either a.) a TBI moment/issue/backlash b.) teen angst or c.) cuz I truely believe God has a wonderful (and possibly warped) sense of humour! I am sure this is the same with every other house in Canada, USA and the world, but when it is happening in your kitchen -- and you are in the centre of it-- nothing else is happening anywhere else in the universe but there!
Sam has been working hard to not only reach his goals but he usually surpasses them by huge leaps and bounds and in a time that is unbelievable to not only us (as parents) but to the doctors as well. All you really need to do is go back and read a few posts from last year to know what I am talking about here... heck go back and read them all to get the full affect of the whole situation!
I wanted to make this post tho to also introduce you to the other 2 men in my life that are not only challenges but huge incredible blessings from God. These are men who yes, do challenge my patience, my sanity and my creativity...
First is my dad.
He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best. On Dec 16, 1995 Sam was born in Neepawa, Manitoba, Papa (my dad) was called to announce the birth(he lived in Bruderheim,Alberta), 4 days later both Sam and I were allowed to go home and on Dec. 22 somewhere around 3AM there was a knock on our door and there stood my dad. Smiling, tired but smiling and wanting to see his grandsons, Josh and Sam. We spent a great Christmas with him and when he left for home on the 27th early in the morning he gave me his favorite jean jacket, kissed and hugged me goodbye and promised to call when he got home. He did and he and I spoke on the phone at least 2-3 times a week after that until Aug long weekend 1996. (I still have the jean jacket ☺)
That was the weekend my mom was remarried to Dwayne and my dad was beaten up by his almost exwife's boyfriend with some help from her too. I wont go into the gory details surrounding the beating but it is enough to say that my dad is now a limited mobility quadripeligic with severe brain damage that has him more like a 7-8 yr old most days (on a 'good' day). I treasure that Christmas with my dad. It was an amazing gift from God, something that I will always hold dear in my heart.
Now my dad has more off days than on it seems. He will talk more with Dennis or the kids than with me, but maybe that is because our last conversation we had had (on the saturday morning of my mom's wedding)ended in a disagreement...I dont know. We are never quite sure what is going on in his head so we are very cautious with what we tell him (he doesnt know about Sam's accident) in case in his more lucid moments he worries and frets about things.
He almost ALWAYS know Dennis and the kids, my mom and his siblings but sometimes I am a sibling or someone totally random. He was at Dennis' wedding but not mine! (Dennis assures me I am his first wife☺) I had thot maybe my dad would confuse me with my mom (Debbi) since we look alot alike and call my daughter Hannah 'Jodi' (since we also look alot alike!) but he has NEVER made that mistake. (Isaac and Hannah were both born after his TBI).
There are many issues that we regularily deal with, with my dad but its all good. He is in a wonderful PCH that has great nurses and aids and other staff supports. We are able to see him more regular now that he has moved here with us to Manitoba (he was living in Alberta with his gf (who looked after his care) up until about 6 years ago).
When we ask my dad to sing songs with us he can do it without thinking but ask him what he did today and sit back for a giggle cuz some of his days are great! Once he was with my granddad buying a new car off the showroom floor! (I checked this story out and it never happened) Another time was when he moved from the old lodge to the new facility he thought he had moved to Gravenhurst, Ontario (this is where he is from) and he was determined that he did... so we let him think it, since the next day he knew where he was (in Neepawa). Somedays he is all smiles and kisses for me and then there are the days where he is glaring and telling me to (insert swear here) off... he tries to bite hands (a defense mechanism for him), he laughs at jokes, he will ask for beer... he will sleep thru a visit and snore to his hearts content...that is my dad now.
The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!
My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%) things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness. 6years ago I went back to college to get my Educational Assistant Dipolma and learned alot about issues with children I would have to learn to work with in a school setting. One of our papers (the major paper) was to choose an 'issue', I chose TBI as it was prevelant to my life and I wanted to know more about what it was doing to my dad and how to use tools to help him and others in my daily life and work. As with most term papers, you get immersed in it and things that were foggy and fuzzy to begin with start to take on more shape and that was when I realized that Dennis had a TBI. Dennis was also going to college to get his Agribusiness and passed the course not only with flying colours but with distinction, and 3 scholarships and cash awards. He also won an award for his business plan that he developed for our our sheep farm! So you see where I am going with the high functioning TBI...neither Sam or Dennis' intellect was dimished due to their TBI-- just thier patterns of thinking, organizing and processing information.
TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.
3 men and baby?!? um no just me
I have been wanting to post this for a while now but due to other things happening (both blessings and not so much blessings) I seemed to put it off more and more. But today I thought I would sit and spend the next day or two getting it all (or as much of it as I can) out and on here.
My Sammi.
He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best.
The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!
My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%) things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness.
TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.
So please indulge for me for a bit while I tell you about 3 (of the 5) men in my life that are my blessings and my cause for many tears, of both happiness and frustration!
First is Sam.
My Sammi. He was my biggest baby at 8lb 13oz and from there on was at the low end of the birth rate scales -- now being my 'smallest' (extremely lean and thin at 5'8" and just barely now 123lbs). He was my quiet baby that would grunt softly for feeding times and he loved to snuggle with me. He was 'my' boy just as Josh was 'dad's' boy...
As you know this blog was started because of an accident that he had on July 29/08 with a .22 calibre rifle that accidentally discharged and struck him in the head -- resulting in a TBI (Traumatic Brain Injury). At this moment in life ( and I am SURE forever) he is my constant reminder that God DOES perform miracles and we should look for them everyday but he is also a reminder that God allows things to happen so He can work thru you, so that other things (maybe another miracle) can happen to someone else (or even yourself!)
Our home usually has daily drama that has occured from either a.) a TBI moment/issue/backlash b.) teen angst or c.) cuz I truely believe God has a wonderful (and possibly warped) sense of humour! I am sure this is the same with every other house in Canada, USA and the world, but when it is happening in your kitchen -- and you are in the centre of it-- nothing else is happening anywhere else in the universe but there!
Sam has been working hard to not only reach his goals but he usually surpasses them by huge leaps and bounds and in a time that is unbelievable to not only us (as parents) but to the doctors as well. All you really need to do is go back and read a few posts from last year to know what I am talking about here... heck go back and read them all to get the full affect of the whole situation!
I wanted to make this post tho to also introduce you to the other 2 men in my life that are not only challenges but huge incredible blessings from God. These are men who yes, do challenge my patience, my sanity and my creativity...
First is my dad.
He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best. On Dec 16, 1995 Sam was born in Neepawa, Manitoba, Papa (my dad) was called to announce the birth(he lived in Bruderheim,Alberta), 4 days later both Sam and I were allowed to go home and on Dec. 22 somewhere around 3AM there was a knock on our door and there stood my dad. Smiling, tired but smiling and wanting to see his grandsons, Josh and Sam. We spent a great Christmas with him and when he left for home on the 27th early in the morning he gave me his favorite jean jacket, kissed and hugged me goodbye and promised to call when he got home. He did and he and I spoke on the phone at least 2-3 times a week after that until Aug long weekend 1996. (I still have the jean jacket ☺)
That was the weekend my mom was remarried to Dwayne and my dad was beaten up by his almost exwife's boyfriend with some help from her too. I wont go into the gory details surrounding the beating but it is enough to say that my dad is now a limited mobility quadripeligic with severe brain damage that has him more like a 7-8 yr old most days (on a 'good' day). I treasure that Christmas with my dad. It was an amazing gift from God, something that I will always hold dear in my heart.
Now my dad has more off days than on it seems. He will talk more with Dennis or the kids than with me, but maybe that is because our last conversation we had had (on the saturday morning of my mom's wedding)ended in a disagreement...I dont know. We are never quite sure what is going on in his head so we are very cautious with what we tell him (he doesnt know about Sam's accident) in case in his more lucid moments he worries and frets about things.
He almost ALWAYS know Dennis and the kids, my mom and his siblings but sometimes I am a sibling or someone totally random. He was at Dennis' wedding but not mine! (Dennis assures me I am his first wife☺) I had thot maybe my dad would confuse me with my mom (Debbi) since we look alot alike and call my daughter Hannah 'Jodi' (since we also look alot alike!) but he has NEVER made that mistake. (Isaac and Hannah were both born after his TBI).
There are many issues that we regularily deal with, with my dad but its all good. He is in a wonderful PCH that has great nurses and aids and other staff supports. We are able to see him more regular now that he has moved here with us to Manitoba (he was living in Alberta with his gf (who looked after his care) up until about 6 years ago).
When we ask my dad to sing songs with us he can do it without thinking but ask him what he did today and sit back for a giggle cuz some of his days are great! Once he was with my granddad buying a new car off the showroom floor! (I checked this story out and it never happened) Another time was when he moved from the old lodge to the new facility he thought he had moved to Gravenhurst, Ontario (this is where he is from) and he was determined that he did... so we let him think it, since the next day he knew where he was (in Neepawa). Somedays he is all smiles and kisses for me and then there are the days where he is glaring and telling me to (insert swear here) off... he tries to bite hands (a defense mechanism for him), he laughs at jokes, he will ask for beer... he will sleep thru a visit and snore to his hearts content...that is my dad now.
The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!
My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%) things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness. 6years ago I went back to college to get my Educational Assistant Dipolma and learned alot about issues with children I would have to learn to work with in a school setting. One of our papers (the major paper) was to choose an 'issue', I chose TBI as it was prevelant to my life and I wanted to know more about what it was doing to my dad and how to use tools to help him and others in my daily life and work. As with most term papers, you get immersed in it and things that were foggy and fuzzy to begin with start to take on more shape and that was when I realized that Dennis had a TBI. Dennis was also going to college to get his Agribusiness and passed the course not only with flying colours but with distinction, and 3 scholarships and cash awards. He also won an award for his business plan that he developed for our our sheep farm! So you see where I am going with the high functioning TBI...neither Sam or Dennis' intellect was dimished due to their TBI-- just thier patterns of thinking, organizing and processing information.
TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.
Wednesday, March 10, 2010
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.
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.
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.
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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