Your daughter qualifies for.....

Monday, November 23, 2009

Your daughter qualifies for......

Special Ed. Those are bittersweet words. I was so happy to hear them and almost as quick as I was excited my heart sank and I had to fight back tears. Because it was being confirmed to me that she was not normal like other kids her age. I knew that. I didn't need anyone to tell me that, but yet the confirmation of it was still a little painful even though it was good news. 

Jaden's teacher pushed really hard with the school to get them to do an evaluation on Jaden. I had to meet with the principal, the director of special ed for the entire district, the special ed teacher at Jaden's school, and the school psychologist. I had to answer many long questionnaires that were annoying like those personality tests. Each meeting was ultimately to discuss the "bad" behavior that my daughter portrayed. It was so not fun. I wish I could control my emotions more because too often in those meetings I couldn't hold back a slight tear or my eyes I could tell were watery. I didn't like that. I think I like control too much and that was out of my control.

The principal and head of special ed for the district both told me when they met with me (individually) that most likely Jaden wouldn't qualify for special ed. They explained that epilepsy alone doesn't qualify a child for it and that because the teacher is pushing for this they are going to go ahead and evaluate her, but not to get my hopes up. They also told me that it would take 30 days to complete the evaluation. Well, within 5 days they called me in to meet with everyone that I had been meeting with individually. It was a group meeting and they said, Mrs. Taylor we have unanimously agreed that Jaden does qualify for special ed. She needs a  1 on 1 right away. We will post for the position today. They also told me that they have never qualified a child that quickly, but that it didn't take long observing her to tell that she needed full time assistance. If you're wondering what she is like, the best way I describe her to all the many Drs. that I see and have to tell each of them what she is like is this: "Imagine putting a 2 or 3 year old in a first grade classroom and expecting them to act like the rest of the 1st graders. It's impossible. She acts identical to a 2 or 3 year old. She can't sit at her desk for more than a few minutes before she is wandering the room. Then when asked to return to her desk she ignores you. Then when you walk towards her to redirect her back to her desk she laughs and runs away and makes you chase her, even if that means chasing her down the hall until you catch up to her. She requires redirection every few minutes. She is happy, she's laughing all the time, she squeals when you try to change what she's doing." That is Jaden. A 2 year old's behavior in the body and mind of a 6 year old.

So within a day the school had hired a 1 on 1 for Jaden. That made my life so much easier. I'm not spending my days at the school anymore. She has an IEP. She will have 1 on 1 reading lessons in the regular classroom. She will go to the special ed room for a 1 on 1 math lesson. And the rest of her lessons will be with the normal class with her aid with her at all times to assist in keeping her focused. I am so thankful the school has programs to help with her. It has made a tremendous difference for all of us.

I am way behind on updates, so I am posting events in the order that they all happened till I'm caught up to date:) This event took place at the end of October.

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

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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.

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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.

Sunday Update

Sunday update

It's so hard to get back into the blogging world, especially when I'm not at home at my own computer. I'm still in Utah with Jaden. She had blood work done on Friday. This was to check her depakote levels. One of the new drugs she is on can affect her liver and so she will have to have blood work done every 6 months. This first blood level was to see what level the depakote is at in her blood. She has an appointment on Monday with the Neurologists again. She is still having quite a few seizures. At least one a day. It's so depressing. She's on so much medication. I don't know what else to do for her. She will have one more appointment on Thursday and then on Friday we finally get to come home. Jaden, Sam, and I are all so excited to get home. We can't wait.

Wednesday Update

Wednesday, September 16, 2009

Wednesday update

Jaden is doing so much better. Yesterday her seizures were down to 35. Then today they dropped all the way down to 2. We are pretty sure that they are going to release her tomorrow. We will have to come back next week for some follow up appointments. She is going to be on 2 meds this time. She's always been on only one. The neurologist said that she hopefully will do better being on two meds because they all work differently in the body.

I have to make a decision. It's been suggested to possibly try the ketogenic diet with her. It's a very restrictive diet and to some degree dangerous. You have to have weekly contact with adietitian. Anyway, lots of components to doing the diet. Jaden's neurologist had suggested it as an option as she is running out of med options. However, the neurologist that is on call right now who has been treating Jaden isn't as hip on doing the diet. She has suggested we wait and see how she does being on 2 meds. I have to decide soon because that will determine how long I have to be down here. If we do the ketogenic diet it will be about a 3 week process before we could go home.

For updates on Ari please visit a blog that Liz started for her. It ishttp://www.prayforari.blogspot.com/. Haley is posting on it now. I would like everyone to hear from her on Ari's updates.

Pictures in the hospital

Monday, September 14, 2009

Pics in the hospital

Our visitors are related to both families. Me and Travis of course are brother and sister. Our spouses Ron and Haley are 1st cousins. Their moms are sisters.

My sister n law, Haley came downstairs for a few minutes to visit Jaden.
My niece, Ari. She is on the 4th floor and we are on the second.

Ari and Haley in their room.

My Mom, Ron's Aunt Danne, Jaden, Ron's Mom Penny, Ron's Aunt Lorri who is also Haley's Mom, Ron's sister Becky, and Ron's cousin Amber.

MIL-Penny, Becky, Amber

My sister n law Amber and Jaden

My brother Travis, my Mom, and my brother Jake

My sister Jaymi, her son Krew, and Sam

Monday's seizure update

Monday's seizure update

We made it to SLC about 9:30 p.m. Sunday. We ate dinner in the cafeteria with my Mom, brother Jake, snl Amber, sister Jaymi, and my brother Travis. After dinner we said goodnight to everyone. My sister Jaymi took Sam for me. Jake and Amber went home, Travis went up to his daughter's room and Jaden, my Mom and I went to the Emergency dept. By about 2:00 a.m. we were admitted and in our room.

Jaden had 75 seizures yesterday. Today she has had 62 so far. They are real short, but they are persistant. She is on her meds she was on + dilantin and depakote. The dilantin is used on her only in the hospital and the depakote will be her new med. I'm not sure if they will keep her on both or wean her off her old med.

It has been fun being with all the family. We got to take Jaden up to Ari's room tonight. We've recieved lots of visitors from our family and Ron and Haley's family. (Ron and Haley are cousins. Their Moms are sisters) Everyone on both sides knows both patients. It's been an eventful day. It's so nice to be with so much family.