Thursday 24 May 2012

icky icky

I realize that is not really a mature way of describing a post.

Ha.


Anyhow, this new medicine that G is taking to help with his, ummmmm -- brain?

...is icky.

He doesn't feel great on it,
sleeps LONG,
and is really REALLY hard to wake up.

Sounds like a broken record, right!

But really, he is much harder to wake up than EVER before.

He also wakes up confused....like,
"hey...what happened today?"


Perfect QUESTION
since it is like 2 pm
and I have been
waking him since...oh...7:30 am.

He had an 8:45 am appointment with a dermatologist
[remember --- teens have SOOO much going on,
add brain injury and ya..... i m INSANE!).
I wish ACNE was the worst of our troubles.

Anyhow...lucky for us another family member could use the 8:45 appointment, when mr. B called me about rescheduling Gs appt. he said "1:45 PM (another day) okay?" Yep.

I still tried to wake G up...
something about us going to pay a parking ticket,
buy him a parking pass to avoid future tickets,
counselor appointment at 11 AM,
lunch with mOm. :)

Nope, none of it today.


What IS possible....Spend 6.5 hours of your day trying to wake up a teen with a brain injury.
(there is comfort knowing
that it may be just as hard
 to wake up a normal teen!)


Anyhow, he remembers none of it! 

"hey....what happened today?"


Icky medicine, icky day.

ICKY ICKY!!!


I suppose
 if a
resting brain
heals faster
than
it is
just
what the doctor ordered,

literally.

Thursday 17 May 2012

breathe?

I am trying....

Last week we had appointments every day but Monday.  I know that sounds like a cliche....but it is true.

Appointment #1:  with the school to talk about what we need to do to alleviate mental stress which is not allowing brain rest, school is all mental stress (for me and G).  It is stress to wake him up, deal with headaches, get him to class on time...NOT....get him to class late, deal with teachers who forget what is going on with him and expect that he should be HEALED by now (i feel their pain...i wish he was healed by now too), and then the stress of absences, and tardies, and assignments missed, half done, forgotten.  It is SO MUCH.  I have left every parent teacher conference this year feeling like the WORSE parent.  In tears, and angry because I feel like I have to explain his situation over and over....8 teachers times 4 conferences each only to be told that disability only covers so much and that they expect him to be doing the requirements for the class, or NOT be in THEIR class. 

Sure.  I will work on that. 

This year we have pulled him from AP classes and Concurrent College courses, to Honors level.  Then...we pulled him from Honors level to basic classes.  We went from a full schedule of 8 classes down to 4 classes....to sluffing school. 

Yep...sluffing.  Did I know that? Well, I suspected.  He only had two classes per day, he left the house about 10:30 - 11 am every day.  I thought we had finally gotten it right.  His courses were basic remedial classes...this should be good.  Maybe this report card would not be full of F's.  (which btw he is not suppose to get F's at all.  He is suppose to get NG or Incompletes so that he can complete the work with parent help and tutors until the end of the school year.  Another piece that teachers who were unwilling to work with his disability missed.) 

Whatever. 

(angry tone --- implied because it is how i feel right now)

So...back to sluffing....he was gone to school but NOT in class.  (websters definition)  I find out later last week that he has been spending two to three hours a day in Seminary and has made up a great deal of his credit there!  I guess if you are going to sluff --- Seminary is not a bad place to be.  It particularly made me smile when Sister Paula told me that he was happy there :)  Good for him going somewhere he could feel happy!

Back to the sluffing....

What's the reason?  Not that I expect to fully understand it but what I get of it is that being in class is so depressing.  He is grieving the G-kid he was before the accident.  The one where school was easier and he had friends and social stature, he was the football player, a hero, a happy friendly kid...most popular....  Now he is the dumb kid...the village idiot.  He hates being in remedial classes and being teased for being stupid because the kids know that he was the SMART football player.  Now he is just ....different. 

I think that if kids could be more accepting and try to understand what happened and embrace him as a student trying to accomplish the same things they are that it would have been easier for him ....but....they are kids.

And G already feels bad enough about himself.  He already has depression and sadness from all the changes in his life, the things he can not do....to have kids snicker and laugh and not be his friend anymore because he is not the same G....
well, trust me ...if he could avoid himself he probably would too. 

He doesn't blame them.  He doesn't seem angry....he just would rather not be there.  He said his teachers don't understand, they don't care...they don't listen or try to work with him...with 1500 kids in the school and likely each teacher dealing with 200 plus situations EACH, kids going through so many things....he gets it.  "It's understandable" he says.  I say it is another example of how the system fails kids.  Really.Good.Kids.

Bottom line is that the High School agreed that he needed to be out of school and work on credit recovery on-line for the rest of the school year.  So that is where we are at. 

On paper it looks great.  Remember me saying what an awesome student he was....he will take 6 on-line courses in credit recovery (.25 credits each --- simple), do three packets (for .5 credits) with teacher tutoring, and come his senior year have a total of 4.75 credits....1.75 of that is elective.  He really only needs 10 credits to graduate.  He had done such a STELLAR job of getting his education in prior to his accident.  He was headed to having two years of college credits upon graduation, wanted to be a brain surgeon.....and now...we just hope he graduates.  We believe he will.  But it will take everything...every bit of patience and prayer and hope.

And the school really complimented me.  I am doing all the right things, and should write a book, or advocate for parents with kids with TBI....so many things right.  (So how come it feels so wrong so much of the time?)  They said if anything...from the BEGINNING...I need to back off....be patient...it will take TIME to heal....and I am so INTENSE...and so sure that I CAN HEAL HIM....by my very WILL POWER. 
(Ya...that's not really working....so maybe I should just calm down a little.)

Appointment #2:  the brain clinic.  Did I mention before we have the BEST brain Doc in our state?

Every time we see someone else they refer us to our own Doctor.  He is the best they say...trust him.  And we do.  We trusted him enough that we let G play football (conservatively) last year.  And yes....he was hurt again...injury upon injury.  This time when we saw the doctor he STRONGLY encouraged...no more football.  Lucky....we had already determined that. 

G made his own decision not to play...and we  I had a LOT of tears.  He said, "everything happens for a reason, don't worry about it.  we will understand someday."

Another piece to the sorrow.  Something else that he loves...that defined him....taken.  Another loss to grieve.

I get it.

Grieving is usually done in 5 stages:  denial, anger, bargaining, depression....and finally acceptance. 

I guess you could say I am in all of these stages at once.  Some for this, others for that....many things that have happened that have brought grief, and the process of grieving.  It is a healthy process, ...but long....and lonely.


Well, encouraging news from the Brain Doctor that we are doing the right things for healing.  Brain rest is key, removal of the stress of school in the classroom.  Finding pieces of life that are enjoyable, being happy. 

Prescription for watching lots of comedy's ....LAUGH.  Spend time with the people you feel are most positive and supportive.  Be happy....don't worry....so much.

Also a couple of medications to help with sleep symptoms and with focus so that while his brain heals and re-wires that it will have the help to do so in the right ways.

I understand better now that the brain memorizes thoughts and feelings.  That when healing it is important to produce happy and healthy reactions and feelings to things.  The sorrow and pressures and the depression of all that has happened are NOT the things we need to focus on.  Those and the circumstances that bring those things on need to be avoided. 

That is REAL BRAIN REST.  So FINALLY we are on a better track to healing.

And the doctor said I was doing a good job....so there is that.  Made me feel like someone sees...and cares about how hard this is.


After a couple of other appointments we felt clearer and calmer about the healing process.

We are on our way.

I will post....and come back to write more, when I have more time to process all that has been happening. 

Cheers!



Wednesday 9 May 2012

ten minutes

can i just say....that it is really hard to go places on time.
i made an appointment with THE doctor at the Brain Clinic 3 MONTHS ago...
the appointment is ten minutes away...in ten minutes....and we are going to be late.

getting anywhere on time, with a TBI, is nearly IMpossible!

no matter how many times i wake him up.
no matter how many times i plead....
"we need to go"
"one hour...
twenty minutes...
ten minutes"

...we will be late.

apparently three months notice is not enough!  ...to be on time.