I didn't realize it had been so long since I'd updated here. I've been lazy with my blog and I apologize for that.
I finally heard back from C's doctor. She decided to take him off two of his meds; his mood stabilizers. I was okay with them taking him off some of the meds to see what would happen but wasn't too sure about taking him off of those specific ones. He had a few rough days while they weaned him off of them but then things seemed to level out. He actually had 2 really good months and we were even thinking that he might get to come home early. I was so excited and so was he. We really wanted him to be home for Thanksgiving and Christmas.
Then things started going down-hill again. The mood stabilizers were completely out of his system and his moods were getting harder and harder for him to control. He started getting into more fights again and was still having trouble staying awake in the mornings. He stopped trying to get his work done at school. He just wasn't able to do what he needed to do. So, at our monthly meeting I asked them about the moods and if they felt he needed to be put on something else to help with that or if they thought it might just be a bad month and see what happened. They went with the latter but did make an adjustment to one of his meds to see if it would help him be more alert int he mornings. Another month went by without any improvement to his mood, but his mornings were going better, so I brought it up again at the monthly meeting. By this point, we were well aware that there was no chance of him coming home early. If he had continued to do as well as a few months ago, he most likely would have been home by the middle of this month.
I've been trying to stay positive about it all but some days that's really difficult. The last couple weeks have been really rough for me. I think the fact of him not coming home early has finally sunk in and it is just more than I can deal with some days; other days I do okay with it. I know he needs the help and he's in a safe place where they can adjust and change his meds without me having to worry about him getting violent again and the chance of suicide are less there where he is monitored around the clock.
The night of our last meeting, I got a call from the doctor. She decided to start him back on a mood stabilizer. Now the waiting has begun again. It can take up to a month to see the full effect of the new med and know if it needs to be increased or not. It probably will need to be adjusted some before they get it just right but all we can do for now is wait and see. So far there doesn't seem to be much change but we've still got about 3 weeks before we can do much else.
He did move up to 7th grade. Barely. So far his grades are okay. He's far from being a straight A student but he didn't have any F's this go-around, so I'm happy. It's progress. He's able to stay awake in the mornings now and isn't fighting getting up and moving. He is still having some trouble with staying on-task though and will simply "zone out" from time to time during classes, even if the teacher or aide is right there with him. This isn't something new, it's just another of the things he does. I'm not sure what to do about that. I know there's another med that could be added to his ADHD medicine to help but that's another pill he'd have to take, another med to watch for side effects, unknown long-term effects, more dose adjustments. I think we'll just hold off on that until this other med is in his system good and go from there. Hopefully we won't have to add yet another pill to his list.
So, right now we're looking at him staying until at least January. Hopefully he will make enough progress to come home then so that we can all get on with our lives. Together.
Tuesday, October 4, 2011
Thursday, March 31, 2011
Busy, busy, busy
It's been too long since I posted last, so this is going to get long. Hell, even if I posted every day, this would be a long one. Sorry, in advance, if this goes in circles and turns into a novel. :)
I'd love to report that C is doing great, but that's not going to happen yet. He continues to refuse to even try to do his school work unless someone is right there beside him, keeping him on track. He's still having frequent verbal altercations but is making decent progress with controling his physical reactions.
At visitation last night, we met with his therapist. It went well and she's working with us to try and figure out something to keep him from failing 6th grade. At this point, that's where he's headed unless we can get him to do his work. She suggested looking into getting a one-on-one aide so that he'll have someone there to help him when he needs it and to keep him on-task. I think this is a great idea. I have brought it up at IEP meetings but it was always knocked down. They don't feel that it's necessary because he is capable of doing the work. They don't want him to use it as a "crutch" and feel that he needs to have someone there all the time. Plain and simple, they don't want to pay for it. I get that he could use it as a crutch and come to depend on it. He already depends on it, he's just not getting it. Is it not possible that he really does "need" a crutch? He's always been extremely dependant. Always. Maybe if he were to get a one-on-one aide and get to where he's doing better at school, and build his self-esteem, he would get to a point where he didn't feel that he needed it any longer. So, the therapist said I would have to talk to the school board office and get it put into his IEP through them due to VA laws. Okay. I'm on it.
I called the school board office this morning and was pretty much told that it would never happen. They most likely wouldn't approve it and that when he gets out of the facility he'll go back to TCAP (Tri-County Alternative Program which is for emotionally disturbed kids) where he would be with only 3-4 other kids and 2 teachers so there would not be any need for the 1/1 aide. TCAP would be like a step-down from the facility and he'd stay there until he was ready to return to regular school. So, pretty much, it's not gonna happen due to the fact that the facility would expect the county school system to pay for the aide.
BULL SHIT! Have you heard of IDEA? NCLB? You know, the federal laws that were put into place to protect children with special needs and provide Free Appropriate Public Education (FAPE)? Yes, FEDERAL laws. If C needs a 1/1 aide it is the responsibility of the school system to provide that to him at no cost to his family. C is disabled. He is in Special Ed. Yet they want to deny an accomodation that could help him tremendously even though they (the county/school board) are getting funding from the government to teach my special ed child which isn't being used for him since he's not at the public school? Where is his funding going? It's not going to the facility because they are getting ready to go after the school system for that money; the money that is rightfully theirs since C is getting his education there right now. Needless to say, I'll be pushing this. I have fought this school system since C was in Kindergarten to get him the help that he needs. I have never had to take them to court before but I have definitely gone "rounds" with them over several issues. Most of the time they find a way around it; just enough to keep me happy enough to stop pushing. Not this time. Enough is enough. My child will get what he needs to succeed which is what these federal laws are in place for. This school system is getting funding for my child's education and that is where that money needs to go. They are going to get a fight this time.
On another note, I'm still waiting on a call-back from his doctor. She still hasn't ruled out Asperger's Syndrome. She feels that he may very well have it but hasn't made a decision or diagnosis yet. I brought this up with the therapist as well and she's supposed to be getting on top of that.
I was reading through my FB wall last night and came across a link to a site about Fragile X Syndrome. FXS is often associated with Autism/Asperger's so that's something else I'm looking into. There are genetic tests that can be done to rule this out or confirm it. It's rare that any insurance will cover the testing but it's still an option. I was up till 3am reading on this and have continued with it today. I'm finding some very interesting things and will be following up on it. I'm gathering info on the condition and family medical info and may be contacting a Genetic Councelor soon.
I think that's about it for now. Hopefully I'll have better news to report next time.
I'd love to report that C is doing great, but that's not going to happen yet. He continues to refuse to even try to do his school work unless someone is right there beside him, keeping him on track. He's still having frequent verbal altercations but is making decent progress with controling his physical reactions.
At visitation last night, we met with his therapist. It went well and she's working with us to try and figure out something to keep him from failing 6th grade. At this point, that's where he's headed unless we can get him to do his work. She suggested looking into getting a one-on-one aide so that he'll have someone there to help him when he needs it and to keep him on-task. I think this is a great idea. I have brought it up at IEP meetings but it was always knocked down. They don't feel that it's necessary because he is capable of doing the work. They don't want him to use it as a "crutch" and feel that he needs to have someone there all the time. Plain and simple, they don't want to pay for it. I get that he could use it as a crutch and come to depend on it. He already depends on it, he's just not getting it. Is it not possible that he really does "need" a crutch? He's always been extremely dependant. Always. Maybe if he were to get a one-on-one aide and get to where he's doing better at school, and build his self-esteem, he would get to a point where he didn't feel that he needed it any longer. So, the therapist said I would have to talk to the school board office and get it put into his IEP through them due to VA laws. Okay. I'm on it.
I called the school board office this morning and was pretty much told that it would never happen. They most likely wouldn't approve it and that when he gets out of the facility he'll go back to TCAP (Tri-County Alternative Program which is for emotionally disturbed kids) where he would be with only 3-4 other kids and 2 teachers so there would not be any need for the 1/1 aide. TCAP would be like a step-down from the facility and he'd stay there until he was ready to return to regular school. So, pretty much, it's not gonna happen due to the fact that the facility would expect the county school system to pay for the aide.
BULL SHIT! Have you heard of IDEA? NCLB? You know, the federal laws that were put into place to protect children with special needs and provide Free Appropriate Public Education (FAPE)? Yes, FEDERAL laws. If C needs a 1/1 aide it is the responsibility of the school system to provide that to him at no cost to his family. C is disabled. He is in Special Ed. Yet they want to deny an accomodation that could help him tremendously even though they (the county/school board) are getting funding from the government to teach my special ed child which isn't being used for him since he's not at the public school? Where is his funding going? It's not going to the facility because they are getting ready to go after the school system for that money; the money that is rightfully theirs since C is getting his education there right now. Needless to say, I'll be pushing this. I have fought this school system since C was in Kindergarten to get him the help that he needs. I have never had to take them to court before but I have definitely gone "rounds" with them over several issues. Most of the time they find a way around it; just enough to keep me happy enough to stop pushing. Not this time. Enough is enough. My child will get what he needs to succeed which is what these federal laws are in place for. This school system is getting funding for my child's education and that is where that money needs to go. They are going to get a fight this time.
On another note, I'm still waiting on a call-back from his doctor. She still hasn't ruled out Asperger's Syndrome. She feels that he may very well have it but hasn't made a decision or diagnosis yet. I brought this up with the therapist as well and she's supposed to be getting on top of that.
I was reading through my FB wall last night and came across a link to a site about Fragile X Syndrome. FXS is often associated with Autism/Asperger's so that's something else I'm looking into. There are genetic tests that can be done to rule this out or confirm it. It's rare that any insurance will cover the testing but it's still an option. I was up till 3am reading on this and have continued with it today. I'm finding some very interesting things and will be following up on it. I'm gathering info on the condition and family medical info and may be contacting a Genetic Councelor soon.
I think that's about it for now. Hopefully I'll have better news to report next time.
Tuesday, March 15, 2011
Quiet Tuesday
Hello followers! It's a quiet, rainy Tuesday here. E is down for her nap. She's trying to do away with naps lately but I guess getting to sleep in a little is worth skipping naptime some days. She's still terrified of foreign potties and "held it" for about 4 hours the other day until we got home from visiting C and getting groceries. She woke at 4am today to go potty and get a drink but was still dry when she got up for the day. I guess learning to "hold it" while we're out is paying off, even if it is a tad annoying when she's repeating "I dry, I dry" then entire time we're out of the house because she's gotta go. She knows that as long as she's dry she doesn't need to go to the bathroom to be changed, thus avoiding the trauma of entering yet another foreign bathroom. Haha! She's so silly.
C is doing pretty good. We've had a couple visits since my last entry and they have gone well. He and E put a puzzle together Sunday and we played a few card games when we could keep them away from E. Thankfully we brought more than one deck. We talked to a staff member who is on C's unit a lot and he said that C is learning to use his coping skills. He's been making a lot of progress with that and is becoming more able to just walk away. Staff guy said that C had been very aggitated the last few days for some reason but was still doing pretty well. Not a bad report and we were very glad to hear it. :)
We'll be visiting again tomorrow and hopfully I'll have another good report to share. Have a great day!
C is doing pretty good. We've had a couple visits since my last entry and they have gone well. He and E put a puzzle together Sunday and we played a few card games when we could keep them away from E. Thankfully we brought more than one deck. We talked to a staff member who is on C's unit a lot and he said that C is learning to use his coping skills. He's been making a lot of progress with that and is becoming more able to just walk away. Staff guy said that C had been very aggitated the last few days for some reason but was still doing pretty well. Not a bad report and we were very glad to hear it. :)
We'll be visiting again tomorrow and hopfully I'll have another good report to share. Have a great day!
Monday, March 7, 2011
Great visit!
Yesterday was visitaion day again. E went down for nap at 12:30 so I wanted to let her rest. I did a little cleaning while waiting for her to wake. I had no idea she would still be asleep at nearly 3:00. It had snowed so I had to clean off the car. {seriously over winter already, come on spring!} E woke right at 3:00 and wasn't even close to ready to leave the house. I decided to leave her home with daddy. I got there to see C and he was a little on edge. He said that one of the other boys had been bossing him around and calling him fat. C decided not to eat much lunch. Actually, he decided to eat a salad with Italian dressing. Due to his meds, he's sensitive to a lot of things. He wasn't able to eat much of the salad because the dressing was "too hot". He ended up eating some peanut butter and something else but not enough to get full. He was starving by 3:30. Anyway, C's therapist came in about 5 minutes before I had to leave. She informed me that C had gotten ALL of his school points on Friday and had had 2 great days in a row! O M G! Yay! Finally! He said "Yeah, I want to come home". Finally, it's sinking in that he's got to get with the program in order to come home. I really hope that he is able to stick with it. I think the sooner he gets on level (14 days in a row without a write-up), the better he'll do. Seeing how good it feels to succeed will hopefully make him want to do better all the time. Yay!
Wednesday, March 2, 2011
Can't wait...
Last night was terrible. I was up until after 2am then once I made myself go to bed, I just laid there - thinking. What the therapist said hit me. "We need to talk.", "I'd rather tell you in person", "He's punishing you for not "saving" him.", "Be prepared.", "You need to be strong and stick to your guns." Okay, when she said those things, I didn't really think it through. Laying in bed, with no distractions, I got scared. I know what C is capable of. I know that he has injured himself before when he hasn't gotten his way. I've sat here and watched him scratch the blood out of his arms and threaten to kill himself because he didn't get his way; trying to get me to give in. Those words sunk in and all I could think of was "OMG! What has he done to himself?". Needless to say, I didn't get much sleep after that and woke up with a headache and on the verge of tears. I hope that I am wrong and that he's just mad and going to give me an earfull when I get there, or that he'll be crying again the entire time I'm visiting. Still, I can't help but think he's hurt himself, in some way, to get to me. So that I'll give in and bring him home. It's going to be a rough day. Waiting. This feeling won't pass until I can see him - until I know he's okay. These are the times that I can't help but wonding just how much damage I'm doing to him by having him there and refusing to bring him home. I know it's for the best but I can't help but worry and wonder.
Tuesday, March 1, 2011
*sigh* Here we go again...
I talked to C last night. He spent the entire time begging me to come get him. I wrote a long post last night about it but got an error when I tried to publish it and I don't have the energy to retype it all. Long story short - not a good call or evening.
I called a little while ago to see how he's done today and didn't get the best news. The nurse said she hadn't been called out for him so at least he didn't have to be restrained or need intervention with meds. Then I talked to his therapist. She asked if we were coming tomorrow for visitation because we really need to talk. Great! *deep breath* *sigh* I asked her why? what's going on? Pretty much, he's punishing us for not coming to get him; for not coming to save him. She told me to be prepared and stick to my guns. It's not going to be easy. As a mom, you want to save your kids. You want to make things better for them. I'll definitely be taking a Xanax before visiting tomorrow. I have a feeling I'm going to need it. This sucks.
I called a little while ago to see how he's done today and didn't get the best news. The nurse said she hadn't been called out for him so at least he didn't have to be restrained or need intervention with meds. Then I talked to his therapist. She asked if we were coming tomorrow for visitation because we really need to talk. Great! *deep breath* *sigh* I asked her why? what's going on? Pretty much, he's punishing us for not coming to get him; for not coming to save him. She told me to be prepared and stick to my guns. It's not going to be easy. As a mom, you want to save your kids. You want to make things better for them. I'll definitely be taking a Xanax before visiting tomorrow. I have a feeling I'm going to need it. This sucks.
Monday, February 28, 2011
Quick update
I got news this morning that C's Medicaid is finally going to go through. They only need one more piece of info from the facility. Yay! It's about time!
So, I called the facility to tell them what they needed to send. I also talked to the nurse and C finally saw the Dr again. She increased his Depakote to 1000mg at night and his Risperdal to 2mg at night. He slept well last night and was actually good and awake at med time this morning. That's awesome! Hopefully his med levels are good now, for a while, and he can start to make more progress. It's odd that he would be more awake with the increase to the Risperdal. Maybe the dose wasn't enough for him to sleep well and not be tired through half the next day? I don't know. I hope that today wasn't a fluke though. He's always had a hard time waking up in the mornings. So much so that he would sleep through most of the morning at school, thus missing out on a lot of learning. When he went in, he was on 1000mg of Depakote but for some reason they lowered it to 500mg. The had increased it to 750mg and now it's back up to 1000mg. Duh. I've been trying to get ahold of the Dr to talk to her about that but never got a call-back from her. Thanks doc. I really hope that now he will be able to control himself and his anger better again. He's still not on level yet.
We had a good visit yesterday. We took him two little lego sets so he was more interested in them than visiting with us. That was okay. As long as he's having a good day and the visit goes well, it's not the length of it that matters.
E is totally potty trained during the day at home now. Sadly, out home and my parents' home is the only place she'll use the potty. She refuses to use anyone else's potty. Daddy took her to visit his dad yesterday and she wouldn't use his either. I can understand not wanting to use public toilets. They are big and loud. I get that. But, a regular toilet, in a home? What's wrong with that? Daddy even had her little Elmo potty seat with them so that it would be more like home but she was having nothing to do with it. Again, she refused, screaming until she peed herself. Poor kiddo. She'll get it. Just trying to be patient. Lord knows, I've learned to be patient over the last several years from dealing with C. We'll get through it all. Eventually ;)
So, I called the facility to tell them what they needed to send. I also talked to the nurse and C finally saw the Dr again. She increased his Depakote to 1000mg at night and his Risperdal to 2mg at night. He slept well last night and was actually good and awake at med time this morning. That's awesome! Hopefully his med levels are good now, for a while, and he can start to make more progress. It's odd that he would be more awake with the increase to the Risperdal. Maybe the dose wasn't enough for him to sleep well and not be tired through half the next day? I don't know. I hope that today wasn't a fluke though. He's always had a hard time waking up in the mornings. So much so that he would sleep through most of the morning at school, thus missing out on a lot of learning. When he went in, he was on 1000mg of Depakote but for some reason they lowered it to 500mg. The had increased it to 750mg and now it's back up to 1000mg. Duh. I've been trying to get ahold of the Dr to talk to her about that but never got a call-back from her. Thanks doc. I really hope that now he will be able to control himself and his anger better again. He's still not on level yet.
We had a good visit yesterday. We took him two little lego sets so he was more interested in them than visiting with us. That was okay. As long as he's having a good day and the visit goes well, it's not the length of it that matters.
E is totally potty trained during the day at home now. Sadly, out home and my parents' home is the only place she'll use the potty. She refuses to use anyone else's potty. Daddy took her to visit his dad yesterday and she wouldn't use his either. I can understand not wanting to use public toilets. They are big and loud. I get that. But, a regular toilet, in a home? What's wrong with that? Daddy even had her little Elmo potty seat with them so that it would be more like home but she was having nothing to do with it. Again, she refused, screaming until she peed herself. Poor kiddo. She'll get it. Just trying to be patient. Lord knows, I've learned to be patient over the last several years from dealing with C. We'll get through it all. Eventually ;)
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