Tuesday, November 11, 2008

Well I've been thinking about what to write, or actually how to write it. Hannah has been struggling. She is struggling both cognitively and emotionally.

Dave and I met with her teacher last week regarding her schoolwork. We have noticed that homework is becoming too much. There have been nights that Hannah has worked nearly 2 hours on her homework. She becomes frustrated after such a long time and just breaks down. Nothing gets done after that. We were told she should be working about 40-45 minutes a night, and after that, she's done. We are noticing this now that the work is becoming more difficult and more fast paced.

Hannah has been going into school at 8:30am each day to work with her aide Mrs. W. They preview work that the class will be doing, so that Hannah has already been exposed to it. They also finish up any work not done during the school day, study for tests, go over times tables, etc. It has really helped a lot, and Hannah's stress level seems to have gone way down. However, Hannah is now falling behind a bit during the day on the classroom work. It's not that she can not comprehend the information, it's that she takes longer to do the work than her peers. She needs more time and more repetition to be able to absorb the material. She already has extra time for tests (time and a half) and she has really needed that. But her teacher also suggested less work load, more time for all tests, including state tests, ranking of homework so that the most important things are done first and worked on for only 40 minutes, working with small numbers, rather than the larger numbers as the work becomes more difficult and no more PT in school, so that she is not out of the classroom for that amount of time. Hannah's neurologist had already suggested no more school PT, and that she do some specific things at home. Hannah has also been evaluated for assistive technology. This would involve any special technological aides to help Hannah organize and process her work. We don't have any results from the evaluation yet to see what their recommendations are.

Hannah has also been struggling emotionally. It seems that when is pushed too far, she just loses it. This can be over too much homework, asking her to brush her teeth, dropping her off at school. We have noticed this for quite some time, but it was rather sporadic until recently. Without going into all the gory details, yesterday I got a call from the assistant principal as well as the school psychologist. Mrs. W. has also been researching information on traumatic brain injury (TBI). The research notes that TBI kids (brain surgery qualifies at TBI) exhibit behavioral problems including not being able to control their temper, not obeying directions, as well as restlessness and agitation. Hannah exhibits ALL of these. And it's getting worse. Sometimes she is totally out of control, screaming, crying, kicking, biting, hiding, hitting, etc. We have tried every approach possible, believe me.

Hannah knows there is a problem. A few weeks ago she called me into her room after I put her to bed. She was crying. She had a difficult time telling me what was wrong. She finally came out with "I'm sad because I was thinking about something. I'm different." I talked with her to see exactly what she meant...different how? Different from other kids, different because there were some things she couldn't do anymore? She just kept saying no. She could not articulate how she was different, she just said "different from before the surgery." She said sometimes she just can't control herself. She can't stop from crying, even though she doesn't want to. She can't stop the rage and anger once it starts. She just knows she is different and that makes her sad.

How is that for heart breaking?

There is more, but I'm ending now for fear of overloading everyone with too much information!

Kim

7 comments:

Anonymous said...

Oh Kim..
that whole thing sounds way to familiar to me.. I don't know if you have this type of thing near you or not.. Dr. Butler is a neuropsychologist.. he is working on something called cognitive remediation. It's interesting stuff. Has a lot to do with repeditive things.. organization... I don't know if they offer it where you are, but Dr. Butler is up at OHSU, where Kasey gets his treatment. The Cognitive Remediation program is very detailed oriented. Might be something worth looking into. The studies show how well it works with kids that "know" something is wrong or different. You have to be real structered.. at least that's what I got out of it. I was going to get Kasey into it.. but, well.. things just arent peachy around here.
I am sorry for all that is going on. I wish for better, more peaceful days for Miss Hannah, and for you guys.

Thinking of you..
Sending hugs,
Amy.. Kasey's mom

Anonymous said...

I am sending many prayers your way. The road has been tough so far and it seems so unfair that you have to deal with these issues now.....I just pray that each day brings a solution, a little more patience, and some answers for you.

Love you all lots!

Angela

Anonymous said...

Hi guys
Tough, very tough! What Amy's mom was talking about sounds interesting, worth looking into. I am sure you have spoken to your own doc's- what suggestions do they have? Continuing my love and prayers, for hope in the days ahead. Please don't lose the faith!
Anne Salice

Anonymous said...

Hi Kim,
I was just reading another kid's website about how this isn't over just because treatment ends. You sure can testify to that. Does Hannah like going to school? Is it possible to go part time so it isn't overwhelming? Kelly just goes to school for 2 classes in the afternoon and does the rest with her home tutor (a teacher at her school.) She couldn't keep up with a regular schedule either, even with her IEP. She moves much slower than her classmates - that is the big reason she does her classes on her own with her tutor - to go at her own pace without the pressure of keeping up with a class of kids that have not had brain surgery! The one on one is also good for her. Please feel free to contact me if you ever want to talk more about it! We have gone through a lot with her school to get this to work. How are you feeling??
I am thinking of you and sending prayers for Hannah and your family!
Kathy, Kelly's mom
kathylaude@cox.net

Anonymous said...

Kim,
I wish I had some uplifting words. It stinks. How's that for uplifting? I'm sorry, my heart just breaks for Hannah- and for you.
I'm praying the 'different' can turn into something good...or at least something that she can manage.
This disease is just so unfair- on so many levels.
I still believe that Hannah will overcome everything and find her way- whatever path she needs to take.
Thanks for mentioning Coleman in your last post. We're all in this together- no matter the outcome for Coleman, for Hannah, for so many, too many- others.
Please let me know if there is ANYTHING we can do...or if you just need to scream. I wonder if you and I screamed together if they would be able to hear it all across New York?!?
Hang in there Kim.
We're praying for your beautiful family.
Hugs to you all.
Peggy and the guys

Anonymous said...

Hi Kim-
Love the picture of Hannah! She nis so beautiful! Love mthe Halloween pics of Colby! Sorry about all the struggles. It stinks. There are people who do Dr Butler's program in various locations around the country- hopefully someone near you. The results are quite good, but you have to be super committed and put time in every day from what I hear. We may consider it at some point for Zach. I understand the fatigue. The drs told us Zach would always be more fatigued bc of the posterior fossa syndrome. The cerebellum is the super highway of the brain, that speeds things up and makes things easier- pretty much everything. So because of the brain injury, our kids have to work sooo much harder to do the simplest thing or task. Not sure if Hannah has hearing loss, but ach has some - but not enough to correct. That too is fatigueing- they have to focus and concentrate harder than others. It stinks. Does Hannah see a psych. she can talk to about things? Or have away to let off steam? My 9 year old NEEDS a physical outlet. For him we found fish oil helps a lot w stabilizing mood & concentration. Not sure if you are using that.

Anyhow- lots of unsolicited advice. My heart is with you. Those are likely to be our issues soon too as the pace picks up in school. I wishthis could be easier for you guys. We really enjoyed meeting you three.
Anne & Zach

Anonymous said...

We, too are praying for you. If you want to try the fish oil, like Anne suggested, please let me know and I'm happy to send you some. In fact, if there is anything you need, please let me know. We are thinking of you!

Love,
The Reyes Family