Do you ever wonder?

Thursday, October 15, 2009

Do you ever wonder?

I had to take a questionnaire from the school psychologist. One of the questions was....My child is enjoyable to be around. You answer with 

1-not true ever 

2-sometimes true and 

3-always true. 

I was teary eyed having to answer with a 1. She's not enjoyable. She's a pain in the butt. I know that is cruel, but it takes such a toll on you when it is every waking moment. I think I need to pray for patience and the ability to love her more. 

Do you ever wonder why we go through what we go through? Why do I have a child that is so "not normal" that she's not enjoyable to be around and is a challenge all the time. It doesn't matter that it's not her fault. She has intractable epilepsy (uncontrolled seizures). The location of her seizures are in the frontal lobe which effect her behavior. That doesn't make it any easier to deal with the behavior. Why does Travis have an absolutely sweet, sweet little girl that is such a pleasure to be around that everyone wants to have her around and yet she is suffering so severely that the parents want her to move on to the next life instead of continuing to endure her pain and suffering.  www.prayforari.blogspot.com

*************************************************************

I decided that it was very necessary for me to go to www.lds.org and look for some answers. I know I know the answers, but at the same time I need reassurance. 

Elder Quintin L. Cook, quorum of the twelve apostles:

We resonate with the Prophet Joseph’s petition after he had been falsely accused and imprisoned in Liberty Jail for months: “O God, where art thou? And where is the pavilion that covereth thy hiding place?”

The Lord’s answer is reassuring:

“My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;

“And then, if thou endure it well, God shall exalt thee on high.”

Elder Quintin L. Cook also said,

"This life is not always easy, nor was it meant to be; it is a time of testing and proving."

I guess that is an answer to my question...Do you ever wonder?

Back Home

Tuesday, October 13, 2009

Back home

We got home October 2. We have to go back down to SLC on November 5. She has an appointment to have more testing done. This time to try and figure out the behavior issues. She is going to have neuropsychometric testing done. I wish I could report good things, but the only good thing is that she is having less seizures (only 4 this past week). However, the behavior is completely out of control. I've been reading on the epilepsy website that kids on 2 or more medications are very likely to have bad behavior. In addition to articles that state this, there are forums where parents have posted stories. Jaden seems to be acting exactly like the rest in her situation. However, even if there is a reason, it does not make it any easier on us or her teacher. She is so bad that last week her first week back, I had to go to school all day with her. She needs a 1 on 1. I haven't had to go this week because the school has assigned her a 1 on 1. Most of the time she just will not focus on any structured thing. She takes the same amount of time to do two math problems while the rest of the class finishes the whole page. That is with me sitting there helping her, but she won't stay focused. You have to redirect her every few seconds. So in addition to the bad behavior she is completely side tracked all the time. She is getting more violent too. She hits me all the time when I'm making her do things she doesn't want to do....like getting dressed for school or having her hair combed. Today when I picked her up she was in the principals office because she scratched her teacher really bad and spit on her. She is just as bad at home as she is at school, unless she is occupied doing what she wants to do. If you try to get her to sit down for dinner or prayers she freaks out and runs away from you and tries hitting you.

********************************************************************

The Neurologist's N.P. just called. She has been more helpful than any Dr. I've ever talked to. She is the one that arranged for Jaden to have neuropsychometric testing done. She is going to talk with the neuropsychologist and the neurologist. I told her I was so frustrated and because the behavior part was so naughty I wonder if she is just a little terd. She said, "No, I'm really sorry, but I think it is because of the location and type of seizures that she has. It is very common to act like this with these seizures. This is the worst kind to have because of their location. Most of our behavior problem patients have these type/location of seizures." Again, glad there is a reason, but it doesn't make it any easier.