Thursday, November 24, 2011

So what do you get when...

so what do you get when you cross a TBI survivor student, his high school teachers and the orginal psych evaluation from 2009?!


yep, seriously. nothing except an extremely frustrated and pissed off mama! 

Sam is falling in the 'normal/average' range for most of his evaluation, but in one area he is actually below average AND that is BELOW where he was 2 years ago! It is in the math skills -- which is his organization and problem solving skills. hmmmmm kind of what we have been telling the school since .... 


I dont know DAY FREAKIN ONE!

 We have been telling them that AND giving THEM the information to help him with this. We have emphasized (or I thot we had) that Sam needs to learn this NOW or he never will. Sam has an iPod and an organizer to use and we just asked that the teachers help with reminding him to use them. Once it gets into his long term memory it will STAY THERE!  sigh I am so frustrated!   So basically if Sam had been helped with these skills up until April 2011, they would have been in his long term memory and he would not be where he is now!

We knew what they were telling us (meaning it was not a surprise since Dennis and I see it here at home) but we were hoping for at least an IMPROVEMENT not a backward step! Whatever happened to the saying of 'no child left behind'? I am not naive to think either that my son is the centre of the teacher world, but when a parent GIVES you information and is working WITH you to help THEIR child... wouldnt you at least TRY to work with them!? Then teachers paint your kid with the "they just dont seem to care" brush! No kidding-- cuz at this point he is starting to not care after 3 years of this from teachers! He started out with a "lets get movin and work" attitude and he does every year when he starts school, then he starts to pick up on the feelings and ACTIONS of teachers. SO he starts to quit and give up! This is TYPICAL teen behaviour BUT is enhanced or aggravated by the fact that there is:
1.) 3 fragments of  bullet in his head
2.) seizures
3.) seizure medications

Initially, when E(psych student) and Dr. D(psych) told us the results my first reaction was "So I basically have wasted the last 3 years of my time looking for the info to help the teachers with their freakin' job!" I know it is a totally selfish thing to think but there you have it!  Why did I bother spending all that time looking for, printing, getting to the teachers if they were not going to use any of it anyway!? 

Like I said to my gf Marianne -- it was yet another 2x4 to the head in the dark...

Wednesday, November 23, 2011

Butterflies are pretty in the summer...

... not when there is snow on the ground and they are in my stomach!

off to Winnipeg today to see the neuropsych for the evaluation results (man too early today it took me 5 minutes to think of the word results...sigh)
I am nervous about this and not too sure why I have butterflies in my stomach about it.
I would love to tell Dennis to go in without me but first of all they want Dennis, Sam and me there and secondly I would be a wreck by the time Dennis and Sam got home.

Time today will tell I guess...

Saturday, November 19, 2011

B.I.M.'s, iPods and teendom

B.I.M.'s-- Brain Injured Moments
iPod -- something we hope will help Sam with his B.I.M.'s, be a source of relaxation and help with him to remember meds
Teendom -- something i hope I am going to survive with our kids

We gave Sam back his iPod this week but there is no Safari on it (to keep him from getting into trouble with it), there is very few games on it (to help  keep him from becoming obsessed with the game and iPod), and there is a new Sticky note app on it. This app is for both Dennis and Sam to write their B.I.M.'s on it thru out their day.  Right now it is just the free app but I am thinking of upgrading it so there is alarms and other things for them to use.

Sam lost his iPod this summer after we had found him using it for things that were not necessarily were best for him. So he lost it for about 4 months and now I have blocked things and we will be checking in on it frequently. (Yes we are those kind of parents-- technology, the internet and kids is a scary combination --so we frequently check at our kids browsing history, cell phones, FB accts...)

I am praying that it really starts to work with Sam and in a positive way.

Lately we have been dealing with not just B.I.M.'s with Sam, but we also have been having major issues with teendom and the other kids. I have been thru every emotion and frustration you can imagine this week -- all from the 'comfort' of my couch... We have had some very scary moments this week and I pray that things have now changed a direction  that is heading in one where people (insert our teens names here) can see that we are here as parents to help and guide...It seems today that parents have so much more to have to deal with than in the past. We have to 'compete' with tv, music, society and technology -- and most of this stuff is gearing kids to think that they know better and dont need family or anyone to get to where they think they need to be.

Stress is huge in any parents life and I think this week we have had more than our share I think.

... here is to a better week next week.
... here is to ALL our kids knowing we love them and want only what is best for them.
... here is to a week where I dont want to run away and not look back

Saturday, November 12, 2011

I thot burn outs were for light bulbs?!

Burnt out?
not really...
maybe a bit...
yes I am tired...
but isnt everyone?
I know I need to take time for me...
but where do I find it in the day?
I am trying...

I read an article the other day about caregiver burn out
I never gave it a thot...
but now I am out of commission ...  to a point
I am on the couch
leg up on a pillow
and told to 'rest it'
I have stretched or tore (something) to my right ACL (which was reconstructed a few years ago) and it looks like my left one could be on its way out too.

After reading the article/letter it was like walking into a brick wall.
This is our life.
Both Dennis and I work hard with the farm, the kids, the kids activities, our parents (there are 4 separate groups of them!), and then add in there that 3 of our members are brain injury survivors.
We struggle with Sam and his issues daily, I do what I can for my dad but thankfully there is the care home to really work with him. But then there is Dennis. Most people dont realize he has an injury but he does and he is so much more like Sam then he wants to admit. I have trouble talking to him about his issues because he IS so much like Sam. Telling him this tho is almost not an option.

So I keep on going (kinda like the energizer bunny)
now I am on my chair with my leg up...

I am physically done (for now) and emotionally I am at the end of my rope and that proverbial knot is slowly starting to unwind. But there is no where or no one for us to turn to for help. Our family options are nil. We went to them a few months back and got no where... so we keep going. We have no really close friends either to ask for some help. And everyone is busy and has their own things to deal with so why would  I burden them?

I keep going.

I feel resentment from my household now that I am suck with my leg up. I feel like they are upset because I am not able to do what my 'job' is as caregiver. Even tho I do what I can (and to be honest I do a lot of what I am not supposed to do -- cuz if I dont who will!?!) their resent meant and attitude make me somedays want to pack it all in and do a run away and let them all deal with it ALL on their own.

But I won't ...
where would I go?

Friday, November 11, 2011

Our home away from home...

A few weeks ago(and since the beginning of this journey), Sam and I were in the city
for 4 days some appointments.  I said I was going to have a post on the wonderful
Ronald McDonald House that we stay at and so here it is!
This house is gorgeous, spacious, functional, safe (you need to have security cards to get in)
 and most of all it is a relaxing atmosphere to visit with other parents and families.
There is a most  definite family feel when you stay here.

This is not my own photo but it is the actual house we stay in!
Trying to keep Sam awake so we could go to his

The time we got up so Sam could have his EEG done --
under 'stress' less than 4 hours sleep...

One of the family rooms -- tv, pool table, air hockey table,
wii, xbox, etc

another of the family rooms(this area is being redone)
& part of the dinning area

The dining area and kitchen

❤My favourite spot at the house ❤--
the coffee area ☺

Our room (facing south)

the North side of our room

the West side of our room

the front entrance by the offices
The wall reads
"Home is not where you live but where they understand you"

The family room at the
Ronald McDonald Family Room at the Children's Hospital --
where families can go while at the hospital. You need to have a child in
critical care or be referred by the Ronald McDonald House
to be here.

Looking out to the south...
There is tv and computers with internet.

The eating area -- you can bring your own food and use the kitchen
area to prepare it and clean up. 

The community kitchen and one of the MANY MANY
lovely volunteers that help keep things running,
and help where needed!

There is daily baking done by volunteers for families to
enjoy while in the Ronald McDonald Family Room!
Both Ronald McDonald areas are filled with amazing people who are there to listen and help where they can.
If you have time stop by their website HERE to see what they are up to and if there is any way in which you can help! It can be anything from gift cards to toys, groceries to DVD's... just click on the donate button and find WISHLIST! Or call them and see what you can do. This link is to the Winnipeg RMH, but you can find your own local one too and see what is available for you to help with!
You never know when you or your family or friends may need to use this wonderful service! I know we never thot we would or that we would still be needing them...