Today I got ahold of the lady in charge of filling out the form that was needed to be faxed to our insurance for the Meridell admission. She filled it out, but the doctor was unavailable until tomorrow morning to SIGN IT, so it has to wait until 8am. So I ask her about whether or not Eli was going to be discharged tomorrow (Wednesday). He is in NO SHAPE to be discharged, but this little rumor has been floating out there and I hadn't been able to get anyone to tell me yes or no, and this time it's no different. The leading therapist has no clue if he will be discharged or not. So I call later, and talk to another therapist/nurse. She has no clue. I call hospital administration multiple times and get no call back. But then my insurance contact calls me to let me know she had been informed that Eli would be getting discharged tomorrow.
They let my insurance person know before letting the parents know. And then, as if that isn't enough to make me see red, when Eli calls tonight, he is jumping for joy because they had been hyping it up to him all day that he was going home tomorrow.
They had the absolute NERVE to discuss this with a 6 year old child, but couldn't tell me that they were discharging him??!! Of all the unethical things to do...I believe this is one of the best I've heard. They told a MINOR what I'd been calling and asking them all day! And you know why? They didn't want to deal with upset parents. They want to discharge him and get him out of their hair. They don't give a crap about his health...They know he is worse off than when we checked him in and they simply don't have the knowledge to be able to help him, so they refuse to deal with it and send him home.
And they are still too lazy to sign and fax the Meridell paperwork, so that slipped right through our fingers. The only place that I have faith for him to go and get help, and they don't have the time to send a fax. So what is our game plan? I don't know. We have about 3 different options, and only time will tell exactly what it is we end up doing. I'll blog as soon as I know.
Tuesday, February 23, 2010
Monday, February 22, 2010
My pet peeve...Incompetent, stupid people - the Shreveport type
Where do I even begin here...Lets see...
I called this morning to "find out where we were in the Meridell transfer process". I was trying to start out nice and cordial enough, but needed to do something to get the ball rolling. So I talked to person number 1 who had no idea what I was talking about...then disconnected me in an attempt to transfer me to person number 2. I called back, was able to talk to person number 2, and she had no idea - even looking at his record. So they transferred me to the voicemail of the overseeing therapist and I left a message...then called back and proceeded to leave several messages throughout the day with no returned call. I called and called and called all day long.
So then I started calling Meridell, and after some phonetag was able to get in touch with the guy we worked closely with last time, Jerry. He is top notch, and remembered us...remembered that I stayed with my parents in OK, was super sweet and sorry that we were back on this track again, but he was fantastic. He was honest and said that the way the hospital here has approached them and the way they were going about things was screwy. They totally bypassed the insurance route and admissions process and just called the admissions line at Meridell. Weird. Brentwood has the form to submit to the insurance, and then the insurance handles it from there...but they honestly are flat out too lazy to fill out the paperwork.
So I got the paperwork from our insurance liason, filled it out for them essentially , gave them a blank copy because THEY are supposed to be the ones to fill it out, and I even typed up a THREE PAGE WORD DOCUMENT giving them additional information to help make it easy for them to fill it out. Ummmm yeah. So I had all that and I just needed to get 2 minutes from the therapist to drive all the way over to her to give it to her.
The day was going by with no phone call to set up a time to do that, so luckily Norman called the hospital administrator and got someone to listen. The administrator had a patient rights advocate call me, and she proceeded to get an earful. She was shocked and frustrated at what had been going on, and was apologetic...blah blah. I told her that I was absolutely regretful of our decision to take him to that hospital, that the staff is incompetent, I never get a phonecall returned, and nobody in that building had an ounce of professionalism and they should be embarassed for what they do there. I also told her that it is horribly inappropriate for the doctor to never talk to or meet with the parents of a minor child, and that we expected some change. We expected someone in that building to pick up the phone and DO something. I told her I even had done the work for them as far as this form is concerned and that they were too lazy to come downstairs and pick it up.
Well, by 4 pm I received a phonecall from the therapist and I drove to the hospital to give her the paperwork. And we proceeded to sit on the couch and I went over it all with her. Everything. How HARD IS THIS?! Then she basically made a phone appointment with me in the morning to make sure I was available to be reached for her questions when she filled out the form in the morning.
Then she tells me that on Saturday (this past Saturday) they wrote up the discharge paperwork for this coming WEDNESDAY.
So lets sum this up. They double the medication that makes him bounce off the freaking walls...do away with the medication that helps stabilize the activity level...get him to a non-functional point where he won't look anyone in the eye, cannot hold a short conversation, literally cannot sit still at all, and in fact tried to crawl UNDER the chair during our family session, and they are going to discharge him in two days, 10 times worse off than when we took him in. And because they did not contact Meridell from the get-go, we are that much further down on the wait list.
Tomorrow the hospital is SUPPOSED to fax the form in to the insurance to get approval on the authorization to transfer him, but will they do it? I don't know...if I have anything to do with it they will...because I will call them 18 times again tomorrow like I did today.
THIS.SUCKS.
I called this morning to "find out where we were in the Meridell transfer process". I was trying to start out nice and cordial enough, but needed to do something to get the ball rolling. So I talked to person number 1 who had no idea what I was talking about...then disconnected me in an attempt to transfer me to person number 2. I called back, was able to talk to person number 2, and she had no idea - even looking at his record. So they transferred me to the voicemail of the overseeing therapist and I left a message...then called back and proceeded to leave several messages throughout the day with no returned call. I called and called and called all day long.
So then I started calling Meridell, and after some phonetag was able to get in touch with the guy we worked closely with last time, Jerry. He is top notch, and remembered us...remembered that I stayed with my parents in OK, was super sweet and sorry that we were back on this track again, but he was fantastic. He was honest and said that the way the hospital here has approached them and the way they were going about things was screwy. They totally bypassed the insurance route and admissions process and just called the admissions line at Meridell. Weird. Brentwood has the form to submit to the insurance, and then the insurance handles it from there...but they honestly are flat out too lazy to fill out the paperwork.
So I got the paperwork from our insurance liason, filled it out for them essentially , gave them a blank copy because THEY are supposed to be the ones to fill it out, and I even typed up a THREE PAGE WORD DOCUMENT giving them additional information to help make it easy for them to fill it out. Ummmm yeah. So I had all that and I just needed to get 2 minutes from the therapist to drive all the way over to her to give it to her.
The day was going by with no phone call to set up a time to do that, so luckily Norman called the hospital administrator and got someone to listen. The administrator had a patient rights advocate call me, and she proceeded to get an earful. She was shocked and frustrated at what had been going on, and was apologetic...blah blah. I told her that I was absolutely regretful of our decision to take him to that hospital, that the staff is incompetent, I never get a phonecall returned, and nobody in that building had an ounce of professionalism and they should be embarassed for what they do there. I also told her that it is horribly inappropriate for the doctor to never talk to or meet with the parents of a minor child, and that we expected some change. We expected someone in that building to pick up the phone and DO something. I told her I even had done the work for them as far as this form is concerned and that they were too lazy to come downstairs and pick it up.
Well, by 4 pm I received a phonecall from the therapist and I drove to the hospital to give her the paperwork. And we proceeded to sit on the couch and I went over it all with her. Everything. How HARD IS THIS?! Then she basically made a phone appointment with me in the morning to make sure I was available to be reached for her questions when she filled out the form in the morning.
Then she tells me that on Saturday (this past Saturday) they wrote up the discharge paperwork for this coming WEDNESDAY.
So lets sum this up. They double the medication that makes him bounce off the freaking walls...do away with the medication that helps stabilize the activity level...get him to a non-functional point where he won't look anyone in the eye, cannot hold a short conversation, literally cannot sit still at all, and in fact tried to crawl UNDER the chair during our family session, and they are going to discharge him in two days, 10 times worse off than when we took him in. And because they did not contact Meridell from the get-go, we are that much further down on the wait list.
Tomorrow the hospital is SUPPOSED to fax the form in to the insurance to get approval on the authorization to transfer him, but will they do it? I don't know...if I have anything to do with it they will...because I will call them 18 times again tomorrow like I did today.
THIS.SUCKS.
Update 2-22-10
Things are not going well...and this is going to be a tough week. We have a major fight on our hands with Brentwood Hospital. Eli is doing worse now than when we took him in 12 days ago. We have found out that the doctor put in charge of his med changes is not a child psychiatrist, but instead a geriatric doctor. Yep. He needs a specialist, they assured us he would be in good hands, yet they have completely dropped the ball and screwed up his medications to the point that we are about ready to break him out of there. It's not that simple though...I signed a form at the hospital that if we took him out before they were ready to discharge him, we would be 100% responsible for the several thousand dollar bill. So we've got to go through the right channels and force their hand to transfer him to Meridell. They are dragging their feet and not wanting to transfer him, even though they know they are not equipped to be able to get his meds right.
This hospital is a joke. This town is a joke. The professionals are unprofessional. There are no child specialists... there are those who claim to be child specialists, but they aren't.
There are two therapy groups in the Shreveport/Bossier City area, and upon first glance they look legitimate. But they are in no way legitimate. Their "therapists" are COLLEGE KIDS who have been given a course in ABA therapy. Yes, you heard me. COLLEGE KIDS. ABA therapy and any therapy in general is a highly specialized area that is not taught in a few weeks course! When I was in college I had some part time jobs, but none of them involved trying to shape a child's life or help them learn appropriate behaviors.
So for the sake of any person who is doing a google search to find therapists or child psychiatrists in Shreveport...let me save you the legwork and heartache...there are none. We are trying to get Eli transferred out of here as quickly as possible, and that is all I can focus on now. If we are able to help Eli at all we have got to get him out of here.
This hospital is a joke. This town is a joke. The professionals are unprofessional. There are no child specialists... there are those who claim to be child specialists, but they aren't.
There are two therapy groups in the Shreveport/Bossier City area, and upon first glance they look legitimate. But they are in no way legitimate. Their "therapists" are COLLEGE KIDS who have been given a course in ABA therapy. Yes, you heard me. COLLEGE KIDS. ABA therapy and any therapy in general is a highly specialized area that is not taught in a few weeks course! When I was in college I had some part time jobs, but none of them involved trying to shape a child's life or help them learn appropriate behaviors.
So for the sake of any person who is doing a google search to find therapists or child psychiatrists in Shreveport...let me save you the legwork and heartache...there are none. We are trying to get Eli transferred out of here as quickly as possible, and that is all I can focus on now. If we are able to help Eli at all we have got to get him out of here.
Wednesday, February 17, 2010
Update 2-17
They upped Eli's dose on the new med Intuniv to 3 mg, and he seemed much more calm and in control of his feelings and emotions tonight. There were a couple of rough spots, but he was SOOO much more managable than he has been. The two major downsides are that he told the morning cafeteria lady to "shut up" - which just boggles my mind. I don't believe I have ever heard him say that...but when he's defiant and in a strange place, I wouldn't put anything past him... And he didn't eat a bite of dinner. We have another family meeting in the morning, then a meeting with his NEW elementary school and then an appt at 5 with a child psychiatrist who MAY (keep fingers crossed) be able to accept him because of the sepcial circumstances... So tomorrow will be a busy day... Stay tuned...
Tuesday, February 16, 2010
Transferring to School Number THREE
So here is the breakdown of what happened educationally for Eli over the past...well...since January 7th. Yeah, all that I am about to explain has occurred between January 7th to February 16th.
So we moved her right before Christmas and since we came from a good public school situation, the only logical thing to do (we thought) was to find out what school we were zoned for and get him enrolled so that he could get started right after the Christmas break. Well, we went into Kerr Elementary and got him enrolled, and then I proceeded to have a heartattack every day during Christmas Break over the school and the bad feelings I had about it. Namely the fact that they would be throwing him into a classroom with no helpers, no aides, no nothing. Basically they would be throwing him to the wolves. I was sick and I stressed...and stressed some more...so we made the decision to put Eli in a private school. They at least had smaller class sizes, which is a huge, HUGE, HUGE thing for him. He needs a smaller class size with more individual attention. I was thrilled, sure this was the answer...he even could go to chapel once a week and learn about God right along with his math and English. Our prayers were answered! Silly me.
We knew it might not work, but we didn't know how rigorous the curriculum was and how demanding they are. The term that has been used a lot by a friend who has a child on the spectrum is "cookie-cutter". They were only used to "cookie-cutter" kids who were all the same, who were able to sit thru their 40 minute lessons. I can't fault them for that...That is who they are used to teaching. And Eli isn't cookie-cutter. He is his own little person who has trouble sitting still for very long, who loves to talk and jump in and be part of the discussion. He's active. But he LOVES school...he LOVES to learn. And although we thought that school might be able to handle him, at one month, they determined that they were not a good fit for him and asked us to find him a new school.
So I contacted the Louisiana State Board of Education. I explained everything from start to finish. They gave me a contact person for Bossier Parrish, which is where we are zoned, so I contacted her. We decided that the best school for Eli would be Bellaire. It is only a K-3 school, smaller class size, more teachers help, and they have an autism classroom that he could go to on the days he was having trouble in the mainstream classroom. Perfect. But after that lady and I hung up, she did some talking, and the school board and Bossier Parrish decided that nah, he didn't need all that. He'd "DO GREAT AT KERR!" Norman and I fought. We tried getting letters from Barksdale to get the transfer approved that way. I spent a lot of time on the phone and in person trying to tell them that the main issue with autism is TROUBLE WITH CHANGE. We were going to have to transfer him to his second school in a month, please lets transfer him to the RIGHT place! But it didn't work. They did reassure me that if Kerr didn't work out THEN they would send him on to Bellaire, but not to worry...Kerr would excede our expectations and he wouldn't have to make another move.
So I filled out the paperwork...again...we went shopping for uniforms...we bought school supplies...we got him as emotionally ready as we could get him to change schools...and he changed to Kerr. He started there on February 8th and attended there thru the 10th. Three days. I won't even give you my first impression of the teacher and how short-tempered she seemed. I was not feeling good about this at all. I also was greatly disturbed that my child had to make a Mardi Gras float for the school parade. WHAT?! I'm sorry, I won't go into my thoughts on Mardi Gras, but I don't view it as child appropriate. So anyway...
Well, you already know about him needing the med change, so he went in-patient the evening of Feb 10th.
All this time I've been wondering if they were going to call me about a meeting...You know, he supposedly has a "team" who will work with us to make sure he is doing well. Well, they called me today. Yep. And guess what? They aren't able to meet his needs at Kerr.... *gasp* REALLY??!!! What was your first clue??!! So after 3 days there...and finally learning how to get to that classroom...HE IS BEING TRANSFERRED TO BELLAIRE, THE SCHOOL WE WANTED IN THE FIRST PLACE! The school THEY agreed was best for him, but the one THEY refused to approve! And that is all that was needed. One SIGNATURE. ONE. To avoid every bit of this. Eli has no idea, and he is going to HAVE. A. COW.
Nice. So I have a meeting at Bellaire on Thursday. Oh I will show up nice. But rest assured all bets are off. I am not going to be run over. I am through being the parent that nods and agrees to the point where my child is lost in the system. Games are over. Bellaire is it, so they better get their crap together. They have one shot to get all the chaos fixed. ONE.
So after some phone calls from the school administrators and from Bossier Parrish school board people, I get a call from the school nurse who wants to discuss health concerns. Yeah right. They're concerned. All I'm concerned with is that my child who is smart, who can read and write and learn is able to do that. He will not fail because THEY do not want to bother with him. Our next phone call is to Senator Landrieu's office. Norman managed to make quite a few friends up on the Hill last year, and he will use them. Perhaps we will have to get a lawyer. We are not going away, and they are going to have to do their job.
So we moved her right before Christmas and since we came from a good public school situation, the only logical thing to do (we thought) was to find out what school we were zoned for and get him enrolled so that he could get started right after the Christmas break. Well, we went into Kerr Elementary and got him enrolled, and then I proceeded to have a heartattack every day during Christmas Break over the school and the bad feelings I had about it. Namely the fact that they would be throwing him into a classroom with no helpers, no aides, no nothing. Basically they would be throwing him to the wolves. I was sick and I stressed...and stressed some more...so we made the decision to put Eli in a private school. They at least had smaller class sizes, which is a huge, HUGE, HUGE thing for him. He needs a smaller class size with more individual attention. I was thrilled, sure this was the answer...he even could go to chapel once a week and learn about God right along with his math and English. Our prayers were answered! Silly me.
We knew it might not work, but we didn't know how rigorous the curriculum was and how demanding they are. The term that has been used a lot by a friend who has a child on the spectrum is "cookie-cutter". They were only used to "cookie-cutter" kids who were all the same, who were able to sit thru their 40 minute lessons. I can't fault them for that...That is who they are used to teaching. And Eli isn't cookie-cutter. He is his own little person who has trouble sitting still for very long, who loves to talk and jump in and be part of the discussion. He's active. But he LOVES school...he LOVES to learn. And although we thought that school might be able to handle him, at one month, they determined that they were not a good fit for him and asked us to find him a new school.
So I contacted the Louisiana State Board of Education. I explained everything from start to finish. They gave me a contact person for Bossier Parrish, which is where we are zoned, so I contacted her. We decided that the best school for Eli would be Bellaire. It is only a K-3 school, smaller class size, more teachers help, and they have an autism classroom that he could go to on the days he was having trouble in the mainstream classroom. Perfect. But after that lady and I hung up, she did some talking, and the school board and Bossier Parrish decided that nah, he didn't need all that. He'd "DO GREAT AT KERR!" Norman and I fought. We tried getting letters from Barksdale to get the transfer approved that way. I spent a lot of time on the phone and in person trying to tell them that the main issue with autism is TROUBLE WITH CHANGE. We were going to have to transfer him to his second school in a month, please lets transfer him to the RIGHT place! But it didn't work. They did reassure me that if Kerr didn't work out THEN they would send him on to Bellaire, but not to worry...Kerr would excede our expectations and he wouldn't have to make another move.
So I filled out the paperwork...again...we went shopping for uniforms...we bought school supplies...we got him as emotionally ready as we could get him to change schools...and he changed to Kerr. He started there on February 8th and attended there thru the 10th. Three days. I won't even give you my first impression of the teacher and how short-tempered she seemed. I was not feeling good about this at all. I also was greatly disturbed that my child had to make a Mardi Gras float for the school parade. WHAT?! I'm sorry, I won't go into my thoughts on Mardi Gras, but I don't view it as child appropriate. So anyway...
Well, you already know about him needing the med change, so he went in-patient the evening of Feb 10th.
All this time I've been wondering if they were going to call me about a meeting...You know, he supposedly has a "team" who will work with us to make sure he is doing well. Well, they called me today. Yep. And guess what? They aren't able to meet his needs at Kerr.... *gasp* REALLY??!!! What was your first clue??!! So after 3 days there...and finally learning how to get to that classroom...HE IS BEING TRANSFERRED TO BELLAIRE, THE SCHOOL WE WANTED IN THE FIRST PLACE! The school THEY agreed was best for him, but the one THEY refused to approve! And that is all that was needed. One SIGNATURE. ONE. To avoid every bit of this. Eli has no idea, and he is going to HAVE. A. COW.
Nice. So I have a meeting at Bellaire on Thursday. Oh I will show up nice. But rest assured all bets are off. I am not going to be run over. I am through being the parent that nods and agrees to the point where my child is lost in the system. Games are over. Bellaire is it, so they better get their crap together. They have one shot to get all the chaos fixed. ONE.
So after some phone calls from the school administrators and from Bossier Parrish school board people, I get a call from the school nurse who wants to discuss health concerns. Yeah right. They're concerned. All I'm concerned with is that my child who is smart, who can read and write and learn is able to do that. He will not fail because THEY do not want to bother with him. Our next phone call is to Senator Landrieu's office. Norman managed to make quite a few friends up on the Hill last year, and he will use them. Perhaps we will have to get a lawyer. We are not going away, and they are going to have to do their job.
Change in Meds...
Well, as we knew when Eli came home from Meridell last May, the medication combination he was on that was working so perfectly would not work forever. His little body is so small and is growing and changing so much, that we knew it would have to be adjusted...that was never in doubt.
I would say around Thanksgiving time we noticed that things were getting harder. He wasn't able to be redirected, he was a ton more stubborn, his eating habits were getting worse and he was refusing to eat things that he knew he even liked. Our saving grace was his school in Virginia and the wonderful teacher and team he had there. He was doing wonderfully, and he got what he needed. They were so good at Fort Belvoir. Then we moved here.
My anger at the military side of things is through the roof. They "okayed" us to move here, supposedly checked the resources to make sure we could get care, and signed off on sending us here. It is apparent that just as usual, they did as little to get by and to send their military member where they wanted to send him, totally disregarding the fact that there is a procedure in place to prevent such a mess. My anger at the agencies I called before we got here is through the roof. The therapy place...the ONLY therapy place here assured me that once we got here, we could get in within two weeks to do the initial consult, and would be starting therapy within a week to two weeks after that. But they told me to wait until we got moved to make the appointment...which I did. But when I did make that appointment they informed me that I would be placed on a waiting list until March. This is a child who needs therapy more on a daily basis than anything else, and now we are having to wait months to get to the initial consult. NOT good.
In the meantime, Eli is needing some medication adjustments. I needed to get in to see a child psychiatrist to get that started, but guess what????? There are approximately 4 child psychiatrists in this area who work with autistic children, and 3 of them aren't taking new patients...and the one I could get in with, graciously got us in on MARCH 24th!!! So yep, we're still waiting on that appt.
So based on the fact that moving and changing environment is hard on autistic children, coupled with the fact that we moved to a place that has zero services for nearly 4 months - and that the services here are severely limited, it has been an absolute disaster. Oh, and how could I forget the Louisiana School System. AWFUL. Flat out embarassingly awful. All I can say is that when we leave this place, I swear to NEVER bring my children back here. EVER. We have watched Eli fall apart before our eyes, and we have been unable to do anything to stop it. So we were left with no choice last week, when he was absolutely in dire need of some medication changes, to have to do it inpatient.
It's hard to explain that experience. Knowing that it should have been prevented...knowing that it shouldn't have had to come down to that. Anger at the fact that I cannot fix things for him. It's frustrating. He cries and begs to come home in the evenings, but he can't...not until they figure out the meds. It would not be good for any of us, and it would only be hard on Eli to have done all these changes but not followed through with making sure they were the RIGHT changes. I think the hardest thing I ever had to come to in my life was realizing that getting him help is the best thing I can do as a mother...denial does nothing but hurt Eli.
So the latest on the situation is that Eli has been inpatient since Wed. Feb 10th, and they have been working on changing his medicine. I talked to his doctor just a few minutes ago, and she wants to make a few more changes, but she is pretty confident that they can get everything done there and not have to go to Meridell...at least not right now. Only time will tell...I'm not sure that I can believe that.
For now though, we are still on those waiting lists, and hopefully we will be able to squeak by until they can start therapy here at home and get the other things started too. Norman is working on getting us transferred to San Antonio this coming Christmas/January time where they have an abundance of resources and help, which would be beyond wonderful. I will be updating Eli's blog more frequently, and I will be sure to let you all know of any changes and/or progress that is made. Thank you for the prayers...they are truly appreciated and at times I think it's all that keeps me going...
I would say around Thanksgiving time we noticed that things were getting harder. He wasn't able to be redirected, he was a ton more stubborn, his eating habits were getting worse and he was refusing to eat things that he knew he even liked. Our saving grace was his school in Virginia and the wonderful teacher and team he had there. He was doing wonderfully, and he got what he needed. They were so good at Fort Belvoir. Then we moved here.
My anger at the military side of things is through the roof. They "okayed" us to move here, supposedly checked the resources to make sure we could get care, and signed off on sending us here. It is apparent that just as usual, they did as little to get by and to send their military member where they wanted to send him, totally disregarding the fact that there is a procedure in place to prevent such a mess. My anger at the agencies I called before we got here is through the roof. The therapy place...the ONLY therapy place here assured me that once we got here, we could get in within two weeks to do the initial consult, and would be starting therapy within a week to two weeks after that. But they told me to wait until we got moved to make the appointment...which I did. But when I did make that appointment they informed me that I would be placed on a waiting list until March. This is a child who needs therapy more on a daily basis than anything else, and now we are having to wait months to get to the initial consult. NOT good.
In the meantime, Eli is needing some medication adjustments. I needed to get in to see a child psychiatrist to get that started, but guess what????? There are approximately 4 child psychiatrists in this area who work with autistic children, and 3 of them aren't taking new patients...and the one I could get in with, graciously got us in on MARCH 24th!!! So yep, we're still waiting on that appt.
So based on the fact that moving and changing environment is hard on autistic children, coupled with the fact that we moved to a place that has zero services for nearly 4 months - and that the services here are severely limited, it has been an absolute disaster. Oh, and how could I forget the Louisiana School System. AWFUL. Flat out embarassingly awful. All I can say is that when we leave this place, I swear to NEVER bring my children back here. EVER. We have watched Eli fall apart before our eyes, and we have been unable to do anything to stop it. So we were left with no choice last week, when he was absolutely in dire need of some medication changes, to have to do it inpatient.
It's hard to explain that experience. Knowing that it should have been prevented...knowing that it shouldn't have had to come down to that. Anger at the fact that I cannot fix things for him. It's frustrating. He cries and begs to come home in the evenings, but he can't...not until they figure out the meds. It would not be good for any of us, and it would only be hard on Eli to have done all these changes but not followed through with making sure they were the RIGHT changes. I think the hardest thing I ever had to come to in my life was realizing that getting him help is the best thing I can do as a mother...denial does nothing but hurt Eli.
So the latest on the situation is that Eli has been inpatient since Wed. Feb 10th, and they have been working on changing his medicine. I talked to his doctor just a few minutes ago, and she wants to make a few more changes, but she is pretty confident that they can get everything done there and not have to go to Meridell...at least not right now. Only time will tell...I'm not sure that I can believe that.
For now though, we are still on those waiting lists, and hopefully we will be able to squeak by until they can start therapy here at home and get the other things started too. Norman is working on getting us transferred to San Antonio this coming Christmas/January time where they have an abundance of resources and help, which would be beyond wonderful. I will be updating Eli's blog more frequently, and I will be sure to let you all know of any changes and/or progress that is made. Thank you for the prayers...they are truly appreciated and at times I think it's all that keeps me going...
Saturday, August 1, 2009
Swimming Lessons & Overcoming Fears
Eli started swimming lessons on July 14th, and I think having the private lessons made all the difference. His teacher, Jen, was fabulous with him, and she went at his pace...verrrry slow. :)
The first day I have to admit I was skeptical, but with each lesson he got a bit more brave, and he tried more and more, and by the end he was actually swimming. He has come so far. Just a few months ago he cried in the bath when we would have to rinse his hair and face in the bath. And now he love swimming under water and diving down to pick up his diving sticks. I love taking him to the pool, and letting him just be so proud of himself. He KNOWS he has overcome a huge fear, and he is so proud of his accomplishment. It's truly unbelievable; I never thought I would see the day.
Here is a picture of him swimming under water...
Here is a picture of him swimming under water...
We have our moments when I'm not sure we are really moving forward...but then we have these moments and I realize we are making huge leaps.
Sunday, July 12, 2009
An overall progress report and new thoughts...
I decided to go back and re-read the blog, so I have done so over the past couple of days. All I know is that as I, read over the pre-Meridell stuff, I am so eternally grateful for his time there. It was so hard to send him, but the changes we've seen...they are nothing short of miraculous. I'm not saying it's always perfect, but nothing ever is. It's just so much better it's amazing.
The medication has helped him get over his fear of getting his face/head wet, so after many trips to the pool and him being so proud that he can dunk his head under the water (a huge triumph for him), I decided that he is finally ready for more swimming lessons. This time, private lessons without me in the pool. He is thrilled about this, and I am I think even more so. We start them Tuesday, and I am so anxious to see how he does.
I also have realized that my biggest struggle is letting people know...letting people in...and letting people help me with supportive words and encouragement. When I get it, it is such a lift to my spirit, yet I am stubborn and proud and don't want people to look at my baby like he is any different. And the thing is, since he's come home from Meridell, most, if not all people, wouldn't have a clue that he was anything different than a normal 5 year old kid. The mornings can be absolutely insane before the medication gets into his system...he is running and jumping and all over the place, but once he gets his medication...he's sweet and obedient...and my normal, sweet Eli.
We don't tell people...talk about his issues except to people close enough to us who watch him and would need to know of potential issues when we are away for an hour or two, or Sunday School teachers who might face an issue in the classroom. But all reports we've gotten back from everyone who has watched/taught him have been wonderful. He's making friends here in our neighborhood, he's obedient in class, he's kind to the other children...And to everyone else, he's just sweet, polite Eli. He says 'please' and 'thank-you'. He is considerate. And when he does have tantrums, he is much more obedient to go to time-out, hand toys over that he has lost priveledge of, and he can turn his behavior around and not let it ruin our whole day. We have made great progress.
And because of that...because of the strength I have found through my faith, family, and my friends...as well as the counselors and teachers at Meridell, I feel strong enough to open up this part of my life that I have tried to keep hidden for so long. The reason for that is because I realize I am NOT alone. There are so many families with this struggle. The latest statistic I read was that 87 children are diagnosed as being on the Autism spectrum each and every day. So maybe my moments of weakness and pain could serve as encouragement to someone who is facing the same exact thing - every single day. So as of today, Eli's blog will become an open blog. If anyone can find hope through our story, then I will have found a bit of peace in knowing that there IS a purpose for this. Our Heavenly Father created my Eli, and he is perfect in his own way. I suppose the biggest struggle I deal with is learning how to cope and best help my special, precious Eli. And never forget that he is a gift. Because on the difficult days it's so much easier to ask "Why Me?" , instead of asking "What should I do...What does he need?".
To understand our story, if you are new to this blog, you have to start at the beginning...the very first post. http://ourjourneytoeli.blogspot.com/2009/02/beginning-of-story.html?zx=7b835d739173b363
And to those of you who have been following...keep checking back. There is so much more in store for us... So with a deep breath...I now open up the blog...
The medication has helped him get over his fear of getting his face/head wet, so after many trips to the pool and him being so proud that he can dunk his head under the water (a huge triumph for him), I decided that he is finally ready for more swimming lessons. This time, private lessons without me in the pool. He is thrilled about this, and I am I think even more so. We start them Tuesday, and I am so anxious to see how he does.
I also have realized that my biggest struggle is letting people know...letting people in...and letting people help me with supportive words and encouragement. When I get it, it is such a lift to my spirit, yet I am stubborn and proud and don't want people to look at my baby like he is any different. And the thing is, since he's come home from Meridell, most, if not all people, wouldn't have a clue that he was anything different than a normal 5 year old kid. The mornings can be absolutely insane before the medication gets into his system...he is running and jumping and all over the place, but once he gets his medication...he's sweet and obedient...and my normal, sweet Eli.
We don't tell people...talk about his issues except to people close enough to us who watch him and would need to know of potential issues when we are away for an hour or two, or Sunday School teachers who might face an issue in the classroom. But all reports we've gotten back from everyone who has watched/taught him have been wonderful. He's making friends here in our neighborhood, he's obedient in class, he's kind to the other children...And to everyone else, he's just sweet, polite Eli. He says 'please' and 'thank-you'. He is considerate. And when he does have tantrums, he is much more obedient to go to time-out, hand toys over that he has lost priveledge of, and he can turn his behavior around and not let it ruin our whole day. We have made great progress.
And because of that...because of the strength I have found through my faith, family, and my friends...as well as the counselors and teachers at Meridell, I feel strong enough to open up this part of my life that I have tried to keep hidden for so long. The reason for that is because I realize I am NOT alone. There are so many families with this struggle. The latest statistic I read was that 87 children are diagnosed as being on the Autism spectrum each and every day. So maybe my moments of weakness and pain could serve as encouragement to someone who is facing the same exact thing - every single day. So as of today, Eli's blog will become an open blog. If anyone can find hope through our story, then I will have found a bit of peace in knowing that there IS a purpose for this. Our Heavenly Father created my Eli, and he is perfect in his own way. I suppose the biggest struggle I deal with is learning how to cope and best help my special, precious Eli. And never forget that he is a gift. Because on the difficult days it's so much easier to ask "Why Me?" , instead of asking "What should I do...What does he need?".
To understand our story, if you are new to this blog, you have to start at the beginning...the very first post. http://ourjourneytoeli.blogspot.com/2009/02/beginning-of-story.html?zx=7b835d739173b363
And to those of you who have been following...keep checking back. There is so much more in store for us... So with a deep breath...I now open up the blog...
Saturday, July 11, 2009
Ice Age III
Today the Autism Society of America (ASA) hosted a national movie day for kids on the spectrum. They did a special showing of Ice Age III, and made some changes for the kids to make them more comfortable. They didn't turn all the lights off, they allowed families to bring their own snacks, and the biggest one is that they turned the volume down to a level that is more comfortable for the kids.
I can't speak for all autistic kids, but I know a lot of them, including Eli, have very sensitive hearing. Sounds that are normal for us like traffic or a car horn, although they may be a bit startling to us, totally are overwhelming for some spectrum kids. Eli used to walk around a lot of places with his hands over his ears until we would tell him it was okay to uncover his ears. And I noticed a little boy who came in with his dad today was covering his ears in anticipation of the loud sound.
The ASA hosts these AMC movies once a month, and our first time at one was just a great experience. We left the movie with Eli talking about how he liked the sound and the lights, and it just made a difference for him. It was a fantastic experience, and I look forward to the next one.
I can't speak for all autistic kids, but I know a lot of them, including Eli, have very sensitive hearing. Sounds that are normal for us like traffic or a car horn, although they may be a bit startling to us, totally are overwhelming for some spectrum kids. Eli used to walk around a lot of places with his hands over his ears until we would tell him it was okay to uncover his ears. And I noticed a little boy who came in with his dad today was covering his ears in anticipation of the loud sound.
The ASA hosts these AMC movies once a month, and our first time at one was just a great experience. We left the movie with Eli talking about how he liked the sound and the lights, and it just made a difference for him. It was a fantastic experience, and I look forward to the next one.
Tuesday, June 16, 2009
A day in the life...
Since Eli has been home there have been lots of ups and downs. We are learning what sets him off, because some of those things have changed since before he went to Meridell, and we are recognizing new obsessions (like he always wants to be on the left, always wants the item on the left, the cup on the left, the chair on the left, etc.). There are moments I feel like I am in that drowning mode again, but we are right on the brink of some HUGE positive life changes for him...and us...so I need to be patient and trust that God will take care of us as only He can.
Life is not perfect. The medication is what has made the biggest difference in Eli's ability to cope with his obsessions and fears and anxiety...but even with a daily medication routine that looks like this...
Life is not perfect. The medication is what has made the biggest difference in Eli's ability to cope with his obsessions and fears and anxiety...but even with a daily medication routine that looks like this...
There is no complete "fix". And every time I look at this I am reminded at how "anti-medication" I am and I have to laugh. Sometimes we are taught lessons that we never feel we need to learn. With that said though, this doesn't help with one major area that is a constant struggle in our household. Short term memory. Eli flat out doesn't have it. Period. He will do something and not know why. You will tell him something and 2 seconds later he has completely forgotten. Seriously.
For example, he KNOWS he has to wash his hands after he goes to the bathroom. He would come out and I would ask him if he washed his hands and he was like "OH MY GOSH I FORGOT!" And he'd go back in and wash them. It wasn't like he was trying to NOT do it...he just couldn't remember TO do it. But he is extremely visual...so we have started putting up signs. They have made a HUGE difference. I can't tell you how much this has helped to improve his cleanliness habits and my stress level with having to remind him to do the simplest tasks. So here are some of my signs...
This one is taped right on the mirror just behind the sink at his eye level, so he is reminded to wash his hands. I even traced HIS hands on the paper to make it more connected to him.
For example, he KNOWS he has to wash his hands after he goes to the bathroom. He would come out and I would ask him if he washed his hands and he was like "OH MY GOSH I FORGOT!" And he'd go back in and wash them. It wasn't like he was trying to NOT do it...he just couldn't remember TO do it. But he is extremely visual...so we have started putting up signs. They have made a HUGE difference. I can't tell you how much this has helped to improve his cleanliness habits and my stress level with having to remind him to do the simplest tasks. So here are some of my signs...
This one is taped right on the mirror just behind the sink at his eye level, so he is reminded to wash his hands. I even traced HIS hands on the paper to make it more connected to him.
The next sign, I can't believe I'm going to share it with you, but it works, so I'm going to post it. I have had to make a rule that when he potties, he has to sit down. If the child tries to pee standing up, he gets bored and doesn't aim at all...so there is a mess for me to clean up every time. So he has to sit. BUT even when he sits, he still gets bored and sidetracked, and doesn't always aim. The last time he didn't aim we ended up with pee in places I didn't know pee could reach...so thus the need for this sign.
Another issue we had was him jumping on the bed. No matter how many times I told him not to, he would do it as soon as I left the room. But since the other signs had worked, I decided to try this one, and it worked! As soon as I put it up, I walked out of the room and waited by the door to see if I would hear the boys climbing up on the bed to jump. I heard Chase crawling up, but then I heard Eli say, "Chase, look at the sign! It says don't jump, so we can't jump on the bed okay?" I was SHOCKED. SHOCKED beyond what I can express. He is such a visual creature...he just needs reminders.
I also made a couple of stop signs that are placed around the house. One is nailed up right by his lightswitch in his bedroom to remind him to stop and check his attitude before he leaves his room and comes out to interact with the rest of the family. This one is still a work in progress, but I think with consistency it will work as well as the others. And the last one is a small hand with STOP written on the handle. I carry that one in my purse or bag, and if he starts acting crazy I just pull that out. It works better than me yelling or trying to get thru to him with words. Seeing things is what gets thru to him, so we are learning to adjust to what works for him, instead of forcing him to do what "should" work for everyone else.
And last but not least, eating is another issue. Hopefully with his therapy this will get better. I'm not sure if it's texture, or smell or whatever other aversion it is, but he is so very picky. We have started this chart, and the deal is that for every dinner time meal he eats without fighting us and actually eating it all, he earns a sticker. Every time he gets 7 stickers, he can decide what dinner will be for one night. If it's cereal, then that's what we'll have. If he wants a peanut butter sandwich, then that's what we'll get. But then he has to start over and earn another 7 stickers by eating 7 meals well. He loves stickers and charts like this, so it is a great incentive for him. 
So that's all for now...It's late and I need to get to bed. I'll update with more behavior issues soon. I hope you all are having a great week...
Stace
Thursday, May 28, 2009
Bump in the road...
Well, where to start - it wasn't smart for me to not have been updating this more frequently...I need to keep up with it better for records sake.
Eli has been doing great overall...but there are some things that came to a boiling point with me yesterday, which made yesterday a crappy day. Basically the biggest help with him is the fact that he is able to "turn it around" as he says, much more easily. He is so much better about once he is disciplined or redirected, he is able to do what you ask and behave better. The biggest problems that we are having are:
*Eating - he is still verrrrrry picky, and he flat out has to be coached through every meal unless it is one of a couple things he will eat on his own. It is tiresome, and very frustrating. This along with some of his other texture issues makes me believe that Jonni is right on in her suggestion of finding an OT for him.
*He is very forgetful. We have have been repeating the rules and the goals each day, but even the reminders we have up for him weren't enough.
*When he gets overstimulated or mad at someone, he pees on the floor in the bathroom on purpose. He does it to aggravate the person he is mad at, and to give them a mess they have to clean up.
These are the biggest issues we have.
The biggest issue I have is realizing that I cannot turn my back to go to the bathroom or do anything in a different room. It seems as if I step out of the room, all hell breaks loose, but as long as I am in the room with my watchful eye then things are just fine. So it is a struggle with me to find it within myself to be tuned in to them constantly. We all need a break to go potty...even if it's only a 5 minute break every couple of hours...but learning to do without that is taking some work on my end. Oh, and a big thing with me is germs. When we do have a mess on the bathroom floor, I go in fully armed to clean it up without me having to actually touch it. After talking to his doctor at Meridell yesterday evening, it is now clear to me that if he does it again, HE will have to be the one to clean it up. This practically makes me have an anxiety attack, because I can see him just touching the pee and getting it all over himself in an attempt to clean it up. But that is what a bath is for, so he will just have to clean it up, and I have to let him. I can disinfect him in the bath afterward, but he has got to learn that his behaviors have consequences...Consequences HE will have to deal with.
Yesterday it seemed like all of these things just happened all together and I had a minor breakdown. The pee in the floor was the straw that broke this camel's back, and I reached my breaking point.
But we now have more posters up. One poster I made that has "Potty Etiquette" and it is posted right at eye level while he is on the potty. It has a picture of a toilet (my artwork sucks, but it works) and a little boy sitting on it, and aiming, and then wiping. Yes, I cannot believe I had to make THAT kind of a poster, but you do what you gotta do. The next poster I made has hands plus a soap bottle with bubbles plus water and it says WASH HANDS. That is taped on the mirror at eye level just above the sink. And then one more bathroom chart I made has space for a sticker for every time he successfully does all of his bathroom etiquette. Once he has 25 stickers, he will earn a reward, so this gives him some incentive to NOT make a mess. So far so good, and he has been enthusiastically perfect on his bathroom "skills".
Next we need to make a poster to put right at the head of his bed that says NO JUMPING. This is something that he always gets hurt doing (landing on an ankle wrong, etc), but he continues to do it. I need to figure out something more creative to get him to stop jumping, but that is next on the list. Right now we just need to focus on the eating and the bathroom stuff.
I need to wind this up. Sheesh, no wonder I don't have a lot of time to blog. Since I've started writing this post, I have swept the balcony (The boys were playing in the sandbox), vacuumed the kitchen and living room (because they decided to track a lot of the sand in), had them both take a bath, unwind to a bit of tv, and now they are in their rooms - Chase is napping and Eli is watching the Suite Life on Disney. It is sooooo nice and quiet.
But I will end on Eli's strong points so that the positives aren't forgotten. He has definitely made progress, and it IS apparent... no matter how much of a struggle some things might still be...
*He has a happier attitude
*He takes redirection much better
*He can calm down and listen to me
*He does look me in the eye, although sometimes it takes me telling him to do it
*He is very polite...using yes ma'am and no ma'am and please and thank you regularly
*He is MUCH better with Chase. Like night and day better. Now they only get into trouble for playing too rough, but it is a mutual thing...
*He is sharing a lot better than before...
And that is where I will stop. It is 11:15 and I need a shower, so I better hop to it while they are resting. That won't last long...
I have GOT to post more frequently so the posts won't be this long...I have to for my sanity! :)
Stace
Eli has been doing great overall...but there are some things that came to a boiling point with me yesterday, which made yesterday a crappy day. Basically the biggest help with him is the fact that he is able to "turn it around" as he says, much more easily. He is so much better about once he is disciplined or redirected, he is able to do what you ask and behave better. The biggest problems that we are having are:
*Eating - he is still verrrrrry picky, and he flat out has to be coached through every meal unless it is one of a couple things he will eat on his own. It is tiresome, and very frustrating. This along with some of his other texture issues makes me believe that Jonni is right on in her suggestion of finding an OT for him.
*He is very forgetful. We have have been repeating the rules and the goals each day, but even the reminders we have up for him weren't enough.
*When he gets overstimulated or mad at someone, he pees on the floor in the bathroom on purpose. He does it to aggravate the person he is mad at, and to give them a mess they have to clean up.
These are the biggest issues we have.
The biggest issue I have is realizing that I cannot turn my back to go to the bathroom or do anything in a different room. It seems as if I step out of the room, all hell breaks loose, but as long as I am in the room with my watchful eye then things are just fine. So it is a struggle with me to find it within myself to be tuned in to them constantly. We all need a break to go potty...even if it's only a 5 minute break every couple of hours...but learning to do without that is taking some work on my end. Oh, and a big thing with me is germs. When we do have a mess on the bathroom floor, I go in fully armed to clean it up without me having to actually touch it. After talking to his doctor at Meridell yesterday evening, it is now clear to me that if he does it again, HE will have to be the one to clean it up. This practically makes me have an anxiety attack, because I can see him just touching the pee and getting it all over himself in an attempt to clean it up. But that is what a bath is for, so he will just have to clean it up, and I have to let him. I can disinfect him in the bath afterward, but he has got to learn that his behaviors have consequences...Consequences HE will have to deal with.
Yesterday it seemed like all of these things just happened all together and I had a minor breakdown. The pee in the floor was the straw that broke this camel's back, and I reached my breaking point.
But we now have more posters up. One poster I made that has "Potty Etiquette" and it is posted right at eye level while he is on the potty. It has a picture of a toilet (my artwork sucks, but it works) and a little boy sitting on it, and aiming, and then wiping. Yes, I cannot believe I had to make THAT kind of a poster, but you do what you gotta do. The next poster I made has hands plus a soap bottle with bubbles plus water and it says WASH HANDS. That is taped on the mirror at eye level just above the sink. And then one more bathroom chart I made has space for a sticker for every time he successfully does all of his bathroom etiquette. Once he has 25 stickers, he will earn a reward, so this gives him some incentive to NOT make a mess. So far so good, and he has been enthusiastically perfect on his bathroom "skills".
Next we need to make a poster to put right at the head of his bed that says NO JUMPING. This is something that he always gets hurt doing (landing on an ankle wrong, etc), but he continues to do it. I need to figure out something more creative to get him to stop jumping, but that is next on the list. Right now we just need to focus on the eating and the bathroom stuff.
I need to wind this up. Sheesh, no wonder I don't have a lot of time to blog. Since I've started writing this post, I have swept the balcony (The boys were playing in the sandbox), vacuumed the kitchen and living room (because they decided to track a lot of the sand in), had them both take a bath, unwind to a bit of tv, and now they are in their rooms - Chase is napping and Eli is watching the Suite Life on Disney. It is sooooo nice and quiet.
But I will end on Eli's strong points so that the positives aren't forgotten. He has definitely made progress, and it IS apparent... no matter how much of a struggle some things might still be...
*He has a happier attitude
*He takes redirection much better
*He can calm down and listen to me
*He does look me in the eye, although sometimes it takes me telling him to do it
*He is very polite...using yes ma'am and no ma'am and please and thank you regularly
*He is MUCH better with Chase. Like night and day better. Now they only get into trouble for playing too rough, but it is a mutual thing...
*He is sharing a lot better than before...
And that is where I will stop. It is 11:15 and I need a shower, so I better hop to it while they are resting. That won't last long...
I have GOT to post more frequently so the posts won't be this long...I have to for my sanity! :)
Stace
Wednesday, May 20, 2009
Homecoming!!!
Eli was discharged from Meridell on May 15, 2009. We had one last appointment with his therapist, went over notes and some helpful things to help with the transition home, then went to his classroom to pick him up. I had held it in, but when we walked into his classroom and his teacher called for him to tell him it was time to go, I just burst into tears. It was so emotional. His classmates were hugging him telling him goodbye, and his teachers were saying how much they enjoyed him and that they didn't want to let him go. He has come so far...
We now have a brand new beginning, and now we can start anew...not only with him and all of the positive changes, but in a new home, new environment, new start all together. Here are a few pictures I took that afternoon...
We now have a brand new beginning, and now we can start anew...not only with him and all of the positive changes, but in a new home, new environment, new start all together. Here are a few pictures I took that afternoon...
Eli with his therapist Micki...she has been an absolutel Godsend, and we have come to cherish her...
Eli with his "Pathway Home" chart. He has been working hard trying to earn greens to put on his chart. Each green got him one step closer to his goal of coming home to be with us!!!!
This isn't the end of this blog...I'm sure as much as this has felt like an entire lifetime to us, it is just the beginning...Friday, April 24, 2009
Overnight Visit with Eli - 4/24/09
First off, the technical stuff ;)
Medications currently on (and the combination that has worked miracles for my sweet boy...)
*Amantadine - 100 mg at 8am and 2pm
*Concerta - 36 mg at 8am
*Tegretol - 400 mg at 8am and 8pm
*Seroquel - 50 mg at 8am
*Seroquel - 100 mg at 8pm
*Benadryl - 25 mg at 8pm
Now, I know you are probably falling out of your chair saying holy cow that is a lot of medicine! But you have to understand the battle Eli's little body is dealing with daily to understand the reasons for treating him with the meds he's on.
His diagnosis is officially PDD - NOS (Pervasive Developmental Disorder, Not Otherwise Specified) which just means that he's on the Autism Spectrum. Also, he has ADHD and ODD, Oppositional Defiant Disorder. Kids who are ADHD and ODD cannot take a stimulant, usually... It's just too much for their bodies to handle, and it makes everything worse...the aggression gets worse, the anger...frustration. BUT for Autistic kids, many of them have to have the stimulant to give them the ability to focus, pay attention, learn from their therapy or school, and/or just participate in life. For Eli it makes the difference in him sitting by himself (not on it) or wanting to be around kids and other people (when he's on it). So it's a catch 22...you give him the stimulant and even though he wants to be with other kids, he can't really handle being around them. So that is where the other meds besides the Concerta come in. The Amantadine is an anticonvulsant that actually relaxes the body and the nervous system so it doesn't get so wound up. The Seroquel and Tegretol are mood stabilizers, so that it helps calm the "crazy energy" side effects of the Concerta, and it makes the Concerta actually do some good for him and he gets real benefits from the combination.
Out of approximately 17 different meds...different combinations, different dosages...FINALLY he was in a place that they slowly got him off of what DIDN'T work, and he is on something that does.
Now, I know you are probably falling out of your chair saying holy cow that is a lot of medicine! But you have to understand the battle Eli's little body is dealing with daily to understand the reasons for treating him with the meds he's on.
His diagnosis is officially PDD - NOS (Pervasive Developmental Disorder, Not Otherwise Specified) which just means that he's on the Autism Spectrum. Also, he has ADHD and ODD, Oppositional Defiant Disorder. Kids who are ADHD and ODD cannot take a stimulant, usually... It's just too much for their bodies to handle, and it makes everything worse...the aggression gets worse, the anger...frustration. BUT for Autistic kids, many of them have to have the stimulant to give them the ability to focus, pay attention, learn from their therapy or school, and/or just participate in life. For Eli it makes the difference in him sitting by himself (not on it) or wanting to be around kids and other people (when he's on it). So it's a catch 22...you give him the stimulant and even though he wants to be with other kids, he can't really handle being around them. So that is where the other meds besides the Concerta come in. The Amantadine is an anticonvulsant that actually relaxes the body and the nervous system so it doesn't get so wound up. The Seroquel and Tegretol are mood stabilizers, so that it helps calm the "crazy energy" side effects of the Concerta, and it makes the Concerta actually do some good for him and he gets real benefits from the combination.
Out of approximately 17 different meds...different combinations, different dosages...FINALLY he was in a place that they slowly got him off of what DIDN'T work, and he is on something that does.
He is a completely different child. Today has been WONDERFUL. During the meeting, the report was that he has had many more greens and yellows, and although the reds are there, they aren't for hitting or pushing so much. So YAY! We then left there with the go ahead for the weekend pass, and headed directly for Chili's. He ate a great lunch, then we went to the Austin Children's Museum. It was a great museum, and we had a great time exploring it. I was so proud of him...when a little boy came and took a truck away from Eli, he just said, "Okay, he can have it" and then he found other things!!! I was SO PROUD of him!!! And a grandmother even came up to me and told me how well behaved he was, and how she believes that children don't behave as well as him these days!!!! (That was because at story time, when the guy was done reading books, he offered stickers to all the kids. The oldest boys like TRAMPLED the little kids and were pushing and shoving to be first, and Eli just sat in his chair and said he'd wait until they were all done getting theirs to get his!!!) If that lady only knew what a glorious moment that was for me...I got so choked up I just thanked her like 4 times and that's all I could say. I don't think I'll ever forget how proud of him I was at that moment. It was like "It's gonna be okay. We're gonna be okay. This was worth it...it was what he needed." It was a much needed feeling for me...I KNOW we've done the right thing, but sometimes it doesn't feel that way. And the constant questioning from other people of "How can you leave a 5 year old alone like that" doesn't make me feel fabulous. But it has been what we needed...And today was proof of that.
Now, I will state 100% EMPHATICALLY that we are in no way out of the woods. This will be a constant fight, and the medications will need to be updated as he grows and his body chemistry changes. But for this moment we are surviving...and we are happy...and we are doing everything that we can for our precious little Eli.
So from the museum we went to Target to get him a toothbrush and some soap that won't burn his eyes (he is seriously scared of soap burning his eyes...to the point of crying if he thinks he has to get his face wet in the bath). Then we went to get his hair cut, and he did great! Then we grabbed dinner at Sonic and brought it back to the hotel to eat while we watched Disney channel and some cartoons on Nick. He had the best time getting to take a bath (he only takes showers at Meridell), and we made boats for him to play with out of cups and lids and straws :). Then I scrubbed him till he was pink, scrubbed his feet with some exfoliator stuff, clipped his nails, and conditioned his hair, moisturized him, and now we both feel a million percent better. I am not sure if it's just me, but I'm not sure how well he is washing up, and I know he's not getting his ears and face very well. Do most 5 year olds bathe themselves? I just don't think that a 5 year old could be that thorough... So at least he's clean tonight. Oh...and I scrubbed his teeth for 3 minutes solid!! :)
He is now watching Phinneas and Pherb, and rubbing his eyes looking really tired.
I am thinking we will get up in the morning, get out of here in time for lunch, and then go find a movie either at an IMAX or at a close theater and do that before I take him back to Meridell. He doesn't have to be back until 6:30, but with all the extra plane tickets we've had to buy, plus the fact that we are MOVING in a week and a half (just to base housing at Fort Belvoir in DC), we just need to save all the money we can; and every extra hundred bucks helps.
Alrighty, well I'm gonna wind this post up and leave you with just a couple pictures that I snapped today/tonight. Thank you for reading and for checking in on us...
Now, I will state 100% EMPHATICALLY that we are in no way out of the woods. This will be a constant fight, and the medications will need to be updated as he grows and his body chemistry changes. But for this moment we are surviving...and we are happy...and we are doing everything that we can for our precious little Eli.
So from the museum we went to Target to get him a toothbrush and some soap that won't burn his eyes (he is seriously scared of soap burning his eyes...to the point of crying if he thinks he has to get his face wet in the bath). Then we went to get his hair cut, and he did great! Then we grabbed dinner at Sonic and brought it back to the hotel to eat while we watched Disney channel and some cartoons on Nick. He had the best time getting to take a bath (he only takes showers at Meridell), and we made boats for him to play with out of cups and lids and straws :). Then I scrubbed him till he was pink, scrubbed his feet with some exfoliator stuff, clipped his nails, and conditioned his hair, moisturized him, and now we both feel a million percent better. I am not sure if it's just me, but I'm not sure how well he is washing up, and I know he's not getting his ears and face very well. Do most 5 year olds bathe themselves? I just don't think that a 5 year old could be that thorough... So at least he's clean tonight. Oh...and I scrubbed his teeth for 3 minutes solid!! :)
He is now watching Phinneas and Pherb, and rubbing his eyes looking really tired.
I am thinking we will get up in the morning, get out of here in time for lunch, and then go find a movie either at an IMAX or at a close theater and do that before I take him back to Meridell. He doesn't have to be back until 6:30, but with all the extra plane tickets we've had to buy, plus the fact that we are MOVING in a week and a half (just to base housing at Fort Belvoir in DC), we just need to save all the money we can; and every extra hundred bucks helps.
Alrighty, well I'm gonna wind this post up and leave you with just a couple pictures that I snapped today/tonight. Thank you for reading and for checking in on us...
Tuesday, April 14, 2009
Chase's Development & Progress
I am going to throw this post in Eli's blog, just because I don't feel comfortable putting it on the main blog, and I need to keep track of this. We have become aware of a couple strange behaviors/abilities so I needed to just jot them down in case it became important in the future. I hope to the Lord above that I am making a note of this for NO necessary reason, but I'm gun shy now...and I just would rather be safe than sorry.
*Jan-Feb timeframe Chase started lining things up certain ways. He does not get upset if you take a car out of the "lineup" or if you switch it to face it another way like Eli did when he was that age.
* April 13th, Chase started bringing me fridge alphabet letters one at a time and was getting them right. At the age of 2. He should not know these because we didn't teach them to him. We've pointed them out to him when reading books and stuff, but not spent time WORKING with him on these enough for him to know so many of them. So we'll keep an eye on his development and progress.
-I will update this particular blog post with all of Chase's info so it doesn't get mixed up in Eli's stuff.
*Jan-Feb timeframe Chase started lining things up certain ways. He does not get upset if you take a car out of the "lineup" or if you switch it to face it another way like Eli did when he was that age.
* April 13th, Chase started bringing me fridge alphabet letters one at a time and was getting them right. At the age of 2. He should not know these because we didn't teach them to him. We've pointed them out to him when reading books and stuff, but not spent time WORKING with him on these enough for him to know so many of them. So we'll keep an eye on his development and progress.
-I will update this particular blog post with all of Chase's info so it doesn't get mixed up in Eli's stuff.
Telephone Conference Visits
I brought Chase home to DC on April 1st, and we are so happy to be home. Chase has been such a daddy's boy since he got home, and it's just been wonderful to be home and to have things as normal as possible. We've done conference calls on Friday April 3rd, Friday April 10th, and then today, April 14th. The biggest change that has been made is that they have completely taken him off of Lithium, and so far he's not had any noticable signs that he stopped taking it. (YAY FOR THAT!) I was terrified honestly when they said they were taking him off of it, but it doesn't seem to be a bad move...yet. We'll just keep an eye on it.
As far as the 3rd, there were no major issues to report - just the usual of how's school, how is he outside of school (he always has more trouble outside of the structure of school), and what are the dosages he's on currently. Nothing major to report.
The conference on the 10th was the same way. It was kind of a funny situation though, because I had taken Chase to a museum to play in the kiddie building land, and the metro got stuck in some kind of mess on the way home so I knew I wasn't going to make it home in time for the call. We had to just get out of the underground metro station to get up to ground level so my phone would get service, so that at least I wouldn't be a no-show. Well, so I exited at the Navy Memorial/Archives exit, and found this little archway to a hotel that I could park Chase's stroller in and we could sit in out of the wind. So I got the call from the therapist, and then got linked up on the conference call with the home psychiatrist, and then it became obvious that we had some company where we were sitting. This guy was seriously smoking something and trying to light a little plant on fire!!! So that was odd... Then I got asked to not loiter! That was a first! But other than that all was well with Eli and it was another "he's doing okay, still having some reds and aggression, but overall he's still doing better". I honestly expect some reds...I mean ALL kids have aggression - even NORMAL ones! :) So I don't equate aggression with autism necessarily...just when it is over the top, out of control aggression.
Then again the same thing today on the 14th. The most significant thing that happened today was that I got my flights booked to fly out to OK/TX and got the hotel booked, and everything is set up for our visit back out there. Poor Chase...I have many friends who have never flown and that poor child has so many frequent flyer miles...I wish I had kept better track of all his flight miles. I cannot believe it will have been 27 days since I have seen Eli when I get to see him next Friday. I didn't know if I would be able to survive it...if Eli could survive it...but we have. And I am proud of both of us. :) My sweet big boy...he is so much stronger than I even could have imagined. I'm so proud of him.
And the HOPE is that we can have our overnight visit this coming Friday. The plan was to go to Seaworld in San Antonio, but his developmental team really didn't think that was a good idea until he was discharged...so I will be coming up with an alternate plan.
Okay, I might make some changes to this post tomorrow...Norman is waiting on me to start watching a movie, so I better wind this up. Thank you all so much for keeping up with us. Knowing that I have people out there who care about us make this bearable on days when I don't think I can keep going. Thank you thank you thank you...from the bottom of my heart. You bless my life more than you know...
As far as the 3rd, there were no major issues to report - just the usual of how's school, how is he outside of school (he always has more trouble outside of the structure of school), and what are the dosages he's on currently. Nothing major to report.
The conference on the 10th was the same way. It was kind of a funny situation though, because I had taken Chase to a museum to play in the kiddie building land, and the metro got stuck in some kind of mess on the way home so I knew I wasn't going to make it home in time for the call. We had to just get out of the underground metro station to get up to ground level so my phone would get service, so that at least I wouldn't be a no-show. Well, so I exited at the Navy Memorial/Archives exit, and found this little archway to a hotel that I could park Chase's stroller in and we could sit in out of the wind. So I got the call from the therapist, and then got linked up on the conference call with the home psychiatrist, and then it became obvious that we had some company where we were sitting. This guy was seriously smoking something and trying to light a little plant on fire!!! So that was odd... Then I got asked to not loiter! That was a first! But other than that all was well with Eli and it was another "he's doing okay, still having some reds and aggression, but overall he's still doing better". I honestly expect some reds...I mean ALL kids have aggression - even NORMAL ones! :) So I don't equate aggression with autism necessarily...just when it is over the top, out of control aggression.
Then again the same thing today on the 14th. The most significant thing that happened today was that I got my flights booked to fly out to OK/TX and got the hotel booked, and everything is set up for our visit back out there. Poor Chase...I have many friends who have never flown and that poor child has so many frequent flyer miles...I wish I had kept better track of all his flight miles. I cannot believe it will have been 27 days since I have seen Eli when I get to see him next Friday. I didn't know if I would be able to survive it...if Eli could survive it...but we have. And I am proud of both of us. :) My sweet big boy...he is so much stronger than I even could have imagined. I'm so proud of him.
And the HOPE is that we can have our overnight visit this coming Friday. The plan was to go to Seaworld in San Antonio, but his developmental team really didn't think that was a good idea until he was discharged...so I will be coming up with an alternate plan.
Okay, I might make some changes to this post tomorrow...Norman is waiting on me to start watching a movie, so I better wind this up. Thank you all so much for keeping up with us. Knowing that I have people out there who care about us make this bearable on days when I don't think I can keep going. Thank you thank you thank you...from the bottom of my heart. You bless my life more than you know...
Saturday, April 11, 2009
Meridell Meeting March 27th
This meeting was especially difficult and emotional for me because I made the decision to fly back to DC with Chase on April 1st. It meant that this would be the last "in-person" visit for a month, and that was a hard pill for me to swallow. Somehow I had equated in my mind that my going home meant abandoning Eli, but I came to grips with it enough to know that I had to go home for Chase's and my sake...and Norman's too. We missed each other...we missed our normal. But I wasn't sure how I could look Eli in the face and answer when he asked when I would be visiting next.
Mom and Chase came with me, and we drove down on the 26th. We stayed in Georgetown, and had a nice time traveling together - talking and eating yummy comfort foods. My meeting with the therapist was at 10 am on Friday morning, and that went well.
Unfortunately Eli had gotten too many reds to get a day pass, and although they were willing to let him go out for the day with us, when I asked their opinion they felt that it would be sending him the wrong message. He KNOWS that he has to get greens and yellows to earn a day pass, and he's had just too many reds. So I agreed, and we decided that consistency is more important at this point than a fun day on the town...so we stayed on campus.
Eli and Chase were overjoyed to see each other. I've never seen Chase light up so much and he kept shrieking 'Eli, Eli, Eli!!!" and smiling and hugging on him.
A couple of AWESOME Eli moments were...
* They had a cookout for the children's unit. We went to eat at this large pavillion with lots of different colored benches, and of course Eli headed straight toward a red bench. But mom and I went to a yellow bench and suggested we sit at the pretty yellow bench and he started to protest, but my sweet baby actually STOPPED...THOUGHT...and then said OKAY! :) No tantrum. No crying. No flinging bodies on the floor. I was so proud of him.
*They let the kids have a coke because it was a special day/event. I still don't like him to have cokes (I know...mean mommy, but a 5 year old does NOT need cokes!), so I struck up a deal with him. If he drank one of the small bottles of water, I would THEN let him have his coke... Once again he protested at first, but then cheerfully agreed!!! Proud moment number 2!
*We noticed throughout the day as the boys were running and playing that Eli did his very best to run AROUND Chase. Like if they were running TO someplace, he would go around him so he wouldn't knock him down. Normally Eli would make a beeline straight for Chase, run him down or push him down and seriously trample him. But he was helpful, loving, kind, and didn't do any of the aggressive behavior like the shoving, running over, etc. That happened all afternoon, and mom and I were so happy to see that.
************
Now there wasn't too much info to gain from the meeting...they had decided to take him off the Lithium, so we were at a wait and see point. With all the reds he had the previous week and a half, they were tweaking some on the doses/medication types, and it was more of just a "here's what we're doing" type meeting.
One of Eli's new little friends had his family visiting also, and that worked out nicely. The boys played together on the playground, and mom and I chatted with that boys parents. I had happened to say to Eli that we were excited because we finally were notified that our number had come up for housing on Fort Belvoir, and that's when we found out that the other family was an Army family! So we discussed military insurance, the different programs and issues we faced dealing with Tricare, and just the different posts. The husband/father in that family is now in Iraq, and my heart goes out to that family. Not only does the wife have to deal with a child in Meridell (and they live in Colorado Springs), but she has a deployed husband in a war zone, and a daughter who was so sweet that she had to keep things relatively "normal" for.
It was a very good visit, but it was terribly hard to leave. We left Eli on the playground with his class, but as we were leaving, Chase ran up to the fence (fenced in playground) and Eli and Chase clasped hands through the fence and both just cried and cried and held on to each others hands. It was such a hard thing to witness...one of the most difficult things I've ever seen. To separate brothers who love each other...and miss each other terribly...was awful. Chase cried for a while after I took his hand and led him away. That was just so hard; it still makes me weepy to think back on it. I will never, ever forget that moment.
Here are some pictures of that visit...I cherish that day so much...
Mom and Chase came with me, and we drove down on the 26th. We stayed in Georgetown, and had a nice time traveling together - talking and eating yummy comfort foods. My meeting with the therapist was at 10 am on Friday morning, and that went well.
Unfortunately Eli had gotten too many reds to get a day pass, and although they were willing to let him go out for the day with us, when I asked their opinion they felt that it would be sending him the wrong message. He KNOWS that he has to get greens and yellows to earn a day pass, and he's had just too many reds. So I agreed, and we decided that consistency is more important at this point than a fun day on the town...so we stayed on campus.
Eli and Chase were overjoyed to see each other. I've never seen Chase light up so much and he kept shrieking 'Eli, Eli, Eli!!!" and smiling and hugging on him.
A couple of AWESOME Eli moments were...
* They had a cookout for the children's unit. We went to eat at this large pavillion with lots of different colored benches, and of course Eli headed straight toward a red bench. But mom and I went to a yellow bench and suggested we sit at the pretty yellow bench and he started to protest, but my sweet baby actually STOPPED...THOUGHT...and then said OKAY! :) No tantrum. No crying. No flinging bodies on the floor. I was so proud of him.
*They let the kids have a coke because it was a special day/event. I still don't like him to have cokes (I know...mean mommy, but a 5 year old does NOT need cokes!), so I struck up a deal with him. If he drank one of the small bottles of water, I would THEN let him have his coke... Once again he protested at first, but then cheerfully agreed!!! Proud moment number 2!
*We noticed throughout the day as the boys were running and playing that Eli did his very best to run AROUND Chase. Like if they were running TO someplace, he would go around him so he wouldn't knock him down. Normally Eli would make a beeline straight for Chase, run him down or push him down and seriously trample him. But he was helpful, loving, kind, and didn't do any of the aggressive behavior like the shoving, running over, etc. That happened all afternoon, and mom and I were so happy to see that.
************
Now there wasn't too much info to gain from the meeting...they had decided to take him off the Lithium, so we were at a wait and see point. With all the reds he had the previous week and a half, they were tweaking some on the doses/medication types, and it was more of just a "here's what we're doing" type meeting.
One of Eli's new little friends had his family visiting also, and that worked out nicely. The boys played together on the playground, and mom and I chatted with that boys parents. I had happened to say to Eli that we were excited because we finally were notified that our number had come up for housing on Fort Belvoir, and that's when we found out that the other family was an Army family! So we discussed military insurance, the different programs and issues we faced dealing with Tricare, and just the different posts. The husband/father in that family is now in Iraq, and my heart goes out to that family. Not only does the wife have to deal with a child in Meridell (and they live in Colorado Springs), but she has a deployed husband in a war zone, and a daughter who was so sweet that she had to keep things relatively "normal" for.
It was a very good visit, but it was terribly hard to leave. We left Eli on the playground with his class, but as we were leaving, Chase ran up to the fence (fenced in playground) and Eli and Chase clasped hands through the fence and both just cried and cried and held on to each others hands. It was such a hard thing to witness...one of the most difficult things I've ever seen. To separate brothers who love each other...and miss each other terribly...was awful. Chase cried for a while after I took his hand and led him away. That was just so hard; it still makes me weepy to think back on it. I will never, ever forget that moment.
Here are some pictures of that visit...I cherish that day so much...
Saturday, March 21, 2009
Meeting/Visit March 18th
Due to Spring Break being this week, I had to have my meeting on a Wednesday because the therapist was going out of town. So that meant home to Oklahoma on Saturday, and then packing up to go again on Tuesday. I think my parents car knows the way to the hotel by memory now.
After our visit to the caverns, Eli seemed to get more homesick, and for the first time he got really emotional during a phone conversation shortly before I went to church on Sunday the 15th. That made for a hard evening, and I was very confused as to how much longer he would be able to stay down there, by himself in that sad state. I was comforted when I talked to Norman later and found out that when he talked to Eli a couple of hours after I had spoken with him, he was in much better spirits.
The cause in the change of emotions...or frankly, the appearance of emotion which had been pretty absent for a while is due to some medication changes and Meridell's good work. They found from all the testing that his issue is seemingly a frontal lobe problem. So they have him on a medication (I'm sorry, I can't remember the name of it right now! I'll fill this in later when I do!! lol) that addresses frontal lobe problems, and it is seeming to make things "connect" a bit better. So he is finally able to express himself better, feel things a bit more, etc. Which (don't get me wrong) is GOOD, but it makes it so hard to hear your baby cry and want to come home, and you know that he can't.
Now for some reason he has had a tougher time the past week with his aggression, and has been getting more reds than greens lately. His therapist thinks that it is because he doesn't see a light at the end of the Meridell tunnel, and so at our visit on the 18th, we set up a timeline. Not only did they feel it was time to start his "Going home chart" but they felt it was also necessary to have him see that he was working on specific goals now.
So this first goal is that he has to earn another day pass for our upcoming visit on March 27th. For each green he gets, he earns 30 minutes of off campus time. For each yellow he earns 15 minutes, and of course for red, he doesn't get any time. We introduced this to him like he was one of the Little Einsteins and that this was his mission. And to sweeten the deal a bit, my mom and dad are coming down for this visit, as well as Chase - who he is dying to see.
I am a bit worried about it, because he called today telling me that he had gotten reds twice today, and so we had a little pep talk about his mission and about our visit. He seemed down, but hopefully he can turn things around; at least he has a week.
So that is that. And after much debate and discussion, I have finally decided to head home to DC. Chase's and my flights are booked for April 1st, so this next weekend is my last in person visit for a while. I'm not sure how I will explain to Eli that I won't be down the next weekend, but I'll have to figure something out. He doesn't have a good concept of time, but he's smart enough to know if I say it'll be a month then that isn't good.
The GOOD news, is that my next in person appointment after the 27th is scheduled for April 24th, and that entire month they will be working on specific behaviors and improvements on that and coping skills, etc. IF he can make good progress then we are looking at him getting to earn a weekend pass that weekend of the 24th. So that would be wonderful!!! I've promised him that on his overnight visit we would go to San Antonio to Sea World, so that is a big incentive for him.
So we shall see. I'm anxious to have our next meeting...see what they are witnessing and what they have to say. They keep me going, and I'm so lucky to be able to be going in person to so many of them. That's all for now...all I can say is to just keep praying. So far so good...
After our visit to the caverns, Eli seemed to get more homesick, and for the first time he got really emotional during a phone conversation shortly before I went to church on Sunday the 15th. That made for a hard evening, and I was very confused as to how much longer he would be able to stay down there, by himself in that sad state. I was comforted when I talked to Norman later and found out that when he talked to Eli a couple of hours after I had spoken with him, he was in much better spirits.
The cause in the change of emotions...or frankly, the appearance of emotion which had been pretty absent for a while is due to some medication changes and Meridell's good work. They found from all the testing that his issue is seemingly a frontal lobe problem. So they have him on a medication (I'm sorry, I can't remember the name of it right now! I'll fill this in later when I do!! lol) that addresses frontal lobe problems, and it is seeming to make things "connect" a bit better. So he is finally able to express himself better, feel things a bit more, etc. Which (don't get me wrong) is GOOD, but it makes it so hard to hear your baby cry and want to come home, and you know that he can't.
Now for some reason he has had a tougher time the past week with his aggression, and has been getting more reds than greens lately. His therapist thinks that it is because he doesn't see a light at the end of the Meridell tunnel, and so at our visit on the 18th, we set up a timeline. Not only did they feel it was time to start his "Going home chart" but they felt it was also necessary to have him see that he was working on specific goals now.
So this first goal is that he has to earn another day pass for our upcoming visit on March 27th. For each green he gets, he earns 30 minutes of off campus time. For each yellow he earns 15 minutes, and of course for red, he doesn't get any time. We introduced this to him like he was one of the Little Einsteins and that this was his mission. And to sweeten the deal a bit, my mom and dad are coming down for this visit, as well as Chase - who he is dying to see.
I am a bit worried about it, because he called today telling me that he had gotten reds twice today, and so we had a little pep talk about his mission and about our visit. He seemed down, but hopefully he can turn things around; at least he has a week.
So that is that. And after much debate and discussion, I have finally decided to head home to DC. Chase's and my flights are booked for April 1st, so this next weekend is my last in person visit for a while. I'm not sure how I will explain to Eli that I won't be down the next weekend, but I'll have to figure something out. He doesn't have a good concept of time, but he's smart enough to know if I say it'll be a month then that isn't good.
The GOOD news, is that my next in person appointment after the 27th is scheduled for April 24th, and that entire month they will be working on specific behaviors and improvements on that and coping skills, etc. IF he can make good progress then we are looking at him getting to earn a weekend pass that weekend of the 24th. So that would be wonderful!!! I've promised him that on his overnight visit we would go to San Antonio to Sea World, so that is a big incentive for him.
So we shall see. I'm anxious to have our next meeting...see what they are witnessing and what they have to say. They keep me going, and I'm so lucky to be able to be going in person to so many of them. That's all for now...all I can say is to just keep praying. So far so good...
Meetings March 6th and 13th
Following the visit Norman and I had on 2-27, I flew home with Norman to DC on Saturday the 28th. The appointment on March 6th was a conference call, so Norman and I went to Eli's home psychiatrist and we called Meridell and did our meeting that way. It was the most uneventful meeting we have had...at that point they were still working on getting his testing done, but the biggest news from that call was that he had gone 6 days in a row WITH NO REDS! That was phenominal, and still has been the longest stretch he has gone being that good.
I flew back from DC on Thursday the 12th, and had an in-person meeting/visit on Friday the 13th. Because of his good behavior, he earned a day pass, which means that we were able to spend the day off of Meridell's campus and do something together. We chose to go to InnerSpace Caverns up in Georgetown (just north of Austin), and we had the BEST TIME! It is such a neat place, and it is a really big cave! We got to see lots of itty bitty bats, and Eli had a fun time. He behaved very well, and was able to really keep on track when it seemed that he might go a little off course. We ended up in Target so that I could get him some more toothbrushes/toothpaste, socks, etc, and of course there were those toys and items that he wanted, but I said no. I explained that I bought him a souvenir from the caves, and he did start to whine and protest, but then corrected himself and said, "Okay mommy, I'll do the right thing. Maybe next time". I was SOOOO proud of him! He seems so grown up. *sometimes* :)
We did get the results of the testing back on that day - earlier on during the meeting. The tests they performed were...
*Wechsler Nonverbal Scale of Ability
*Wide Range Assessment of Memory and Learning - Second Edition
*Wechsler Individual Achievement Test - Second Edition
*Delis-Kaplan Executive Functions System, Verbal Fluency, Design Fluency
*Trail Making 1-5
*Index Finger Tapping, Lateral Dominance, Grooved Pegboard
*The Berry-Buktenica Developmental Test of Visual-Motor Integration
*Oral and Written Language Scales
*The SNAP-IV Teacher and Parent Rating Scale
He scored either in the average ranges or high ranges for his same age and grade peers, but what is confusing is that during testing he was not paying attention. He was all over the place, because this was before they had him on the medications he is on now. He was in and out of his seat, focused on other things going on in the room, and they had a hard time getting him to focus. We are all left wondering what the "true" scores would be if he had been paying attention, but needless to say we are happy that he isn't experiencing huge delays in most major areas. The problems that they do report are as follows (I'm taking the paragraph from the report).
Testing suggests significant problems with recalling verbal information without cuing and moderately impaired visual working memory. Visual attention functioning was also quite variable and mildly impaired on one measure.
About his language, they did say this...
Eli's spontaneous expressive language was generally fluent and free from paraphasic errors. His articulation and pragmatics appeared grossly intact. There was a significant difference between his receptive and expressive language scores, indicating that Eli performed better on receptive language tasks than on expressive language tasks.
And about his behavior during one of the interview sessions...
He was extremely fidgety throughout the interview, and eye contact was rare and fleeting. Eli's receptive and expressive language functioning appeared grossly intact. His thought process appeared logical and goal oriented.
During the testing period, his medications were as follows:
*Lithium - 150 mg 3x per day
*Concerta - 18 mg 2x per day
*Seroquel - 25 mg 2x per day and 100 mg at bedtime
*Depakote - 125 mg 2x per day
Sometime after the testing period, they took him completely off Depakote and added in two new meds. They have been lowering the Seroquel (I believe with the intent of doing away with it eventually).
So that is enough on those meetings and visits. More to come soon...
I flew back from DC on Thursday the 12th, and had an in-person meeting/visit on Friday the 13th. Because of his good behavior, he earned a day pass, which means that we were able to spend the day off of Meridell's campus and do something together. We chose to go to InnerSpace Caverns up in Georgetown (just north of Austin), and we had the BEST TIME! It is such a neat place, and it is a really big cave! We got to see lots of itty bitty bats, and Eli had a fun time. He behaved very well, and was able to really keep on track when it seemed that he might go a little off course. We ended up in Target so that I could get him some more toothbrushes/toothpaste, socks, etc, and of course there were those toys and items that he wanted, but I said no. I explained that I bought him a souvenir from the caves, and he did start to whine and protest, but then corrected himself and said, "Okay mommy, I'll do the right thing. Maybe next time". I was SOOOO proud of him! He seems so grown up. *sometimes* :)
We did get the results of the testing back on that day - earlier on during the meeting. The tests they performed were...
*Wechsler Nonverbal Scale of Ability
*Wide Range Assessment of Memory and Learning - Second Edition
*Wechsler Individual Achievement Test - Second Edition
*Delis-Kaplan Executive Functions System, Verbal Fluency, Design Fluency
*Trail Making 1-5
*Index Finger Tapping, Lateral Dominance, Grooved Pegboard
*The Berry-Buktenica Developmental Test of Visual-Motor Integration
*Oral and Written Language Scales
*The SNAP-IV Teacher and Parent Rating Scale
He scored either in the average ranges or high ranges for his same age and grade peers, but what is confusing is that during testing he was not paying attention. He was all over the place, because this was before they had him on the medications he is on now. He was in and out of his seat, focused on other things going on in the room, and they had a hard time getting him to focus. We are all left wondering what the "true" scores would be if he had been paying attention, but needless to say we are happy that he isn't experiencing huge delays in most major areas. The problems that they do report are as follows (I'm taking the paragraph from the report).
Testing suggests significant problems with recalling verbal information without cuing and moderately impaired visual working memory. Visual attention functioning was also quite variable and mildly impaired on one measure.
About his language, they did say this...
Eli's spontaneous expressive language was generally fluent and free from paraphasic errors. His articulation and pragmatics appeared grossly intact. There was a significant difference between his receptive and expressive language scores, indicating that Eli performed better on receptive language tasks than on expressive language tasks.
And about his behavior during one of the interview sessions...
He was extremely fidgety throughout the interview, and eye contact was rare and fleeting. Eli's receptive and expressive language functioning appeared grossly intact. His thought process appeared logical and goal oriented.
During the testing period, his medications were as follows:
*Lithium - 150 mg 3x per day
*Concerta - 18 mg 2x per day
*Seroquel - 25 mg 2x per day and 100 mg at bedtime
*Depakote - 125 mg 2x per day
Sometime after the testing period, they took him completely off Depakote and added in two new meds. They have been lowering the Seroquel (I believe with the intent of doing away with it eventually).
So that is enough on those meetings and visits. More to come soon...
Saturday, March 14, 2009
Thank you
I just wanted to say thank you to each of you for your comments, prayers, emails, phone calls and cards. I'm sorry I'm so horrible about commenting you back in a timely manner...please know that each comment is so special, and each one of you is appreciated more than you know.
Our visit yesterday went so wonderfully well. I will be posting an in-depth update very soon...I'll try hard to do it tomorrow. We finally got some "real" answers and some results of some of the testing, so for the first time in all of this journey we are moving forward, and I truly feel that way. We still have a long way to go, but Eli has made leaps and bounds...and I will blog about it very soon. I just wanted to let you all know how thankful I am for you...
XOXO
Our visit yesterday went so wonderfully well. I will be posting an in-depth update very soon...I'll try hard to do it tomorrow. We finally got some "real" answers and some results of some of the testing, so for the first time in all of this journey we are moving forward, and I truly feel that way. We still have a long way to go, but Eli has made leaps and bounds...and I will blog about it very soon. I just wanted to let you all know how thankful I am for you...
XOXO
Monday, March 9, 2009
Point Store
I've been meaning to write this post for awhile and the time just keeps getting away from me. But I'm inbetween emails and calls from Meridell and Virginia's school program called Child Find that helps place him in the right school for next fall, so I thought I'd do it since Eli's on my brain.
At Meridell they have this incentive for the kids called Point Store.
Each day is broken down into segments - basically it boils down to a morning timeframe, afternoon, and then evening timeframe. They get points based on their behavior for each segment of the day, and the scale is a color based system.
Green - great behavior - 5 points
Green - good behavior - 4 points
Yellow - pretty good with some testy moments - 3 points
Yellow - okay, but not great - 2 points
Red - Not good 1 point
Each Friday they tally up the points and let the kids pick out an item from their "store" which is a room with cases and cases of "stuff". Toys, nice bath stuff, games, presents for parents, school supplies, pillows, blankets...all kinds of stuff. They have some NICE stuff!
You can either spend your points, or roll them over to the next week and save them up to get bigger prizes. It's kind of like at Chuck E. Cheese where the more points you have, the nicer toy you get, so same thing at Meridell.
Before this new medication, Emantadine, he was getting Reds and Yellows. But it's nuts...as soon as they put him on Emantadine, he has gotten all greens. Seriously...ALL GREENS! Go Eli! Now, we're not sure if it is a fluke and he's just being good, or if it truly is that the medicine is really helping him be able to control his emotions. Only time will tell I guess.
So far so good though, and hopefully he will earn his day pass on Friday so that we can go off campus! :) Alright...back to the phone and email for me... :)
At Meridell they have this incentive for the kids called Point Store.
Each day is broken down into segments - basically it boils down to a morning timeframe, afternoon, and then evening timeframe. They get points based on their behavior for each segment of the day, and the scale is a color based system.
Green - great behavior - 5 points
Green - good behavior - 4 points
Yellow - pretty good with some testy moments - 3 points
Yellow - okay, but not great - 2 points
Red - Not good 1 point
Each Friday they tally up the points and let the kids pick out an item from their "store" which is a room with cases and cases of "stuff". Toys, nice bath stuff, games, presents for parents, school supplies, pillows, blankets...all kinds of stuff. They have some NICE stuff!
You can either spend your points, or roll them over to the next week and save them up to get bigger prizes. It's kind of like at Chuck E. Cheese where the more points you have, the nicer toy you get, so same thing at Meridell.
Before this new medication, Emantadine, he was getting Reds and Yellows. But it's nuts...as soon as they put him on Emantadine, he has gotten all greens. Seriously...ALL GREENS! Go Eli! Now, we're not sure if it is a fluke and he's just being good, or if it truly is that the medicine is really helping him be able to control his emotions. Only time will tell I guess.
So far so good though, and hopefully he will earn his day pass on Friday so that we can go off campus! :) Alright...back to the phone and email for me... :)
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