Sorry I've been away for awhile but this past week has been pretty rough on both Jake and I. It pretty much started last Thursday when there was a pretty massive blow up at home, all started over homework of course. He got upset and I was so close to my breaking point that I finally snapped myself and said some horrible things to him and pushed him too far over the edge. He snapped too. Things got damaged, doors got broken. It was ugly. Things calmed down and we worked though it. He felt bad and so did I but it was obvious that things were getting strained between us.
I can't remember where I left off with the Brain Balance story but we went ahead with the assessment and I met with the Dr on Monday about the results. After almost 1.5 hours I walked out of there knowing pretty much everything I already did before I even walked in there. However, I guess I can at least say that I did get some answers as to why things are the way they are.. Now they want the $6000 and 12 weeks to fix him because they say they can. Sorry but no thank you.. We don't have 12 weeks.
Tuesday I kept him from school because he didn't sleep very well Monday night.. He stayed with mom and never did go back to sleep. Wednesday was a bad day at school. Ooops! Guess I sent him on the wrong day!!! No suspensions though.
I finally decided on a new Dr earlier in the week and made his first appointment for next Tuesday. Was all excited about it. Then on Tuesday after making the decision to keep him home form school I decided to call St Vincent Stress Center ( at the recommendation of my Mother) and set up an appointment for an assessment for their programs since we have had NO LUCK with Comm Hospitals.
He got a good night sleep last night, 12 hours of sleep actually. We had some time to spend together this morning before the assessment and for the most part it was a good morning with a few MINOR little attitude issues. We get to the appointment (late of course) and I start the paperwork. He was still doing ok but definitely a little restless. Finally it was time to start the assessment. He went first and was with the Dr for about 45 minutes. He came out smiling and happy and said Mommy, it's your turn. SO I went back for my turn with the Dr. He was out in the hallway waiting on me. He was assessed and paperwork was signed for him to start IOP Intensive Outpatient Therapy on Monday- 3 days a week for 3 hours a day for 4-6 weeks. I was on the way out to get him and sing the file paperwork and we couldn't find Jake.
Something had upset him and as I somehow managed to look out the window we saw him. Being carried in my at least 6 Orderlies. He was at this point, kicking, screaming, fighting and cussing and within 5 minutes he had gone from starting IOP on Monday to being admitted to INPATIENT. I didn't get to see him after that but I heard him fighting and screaming. So after more paperwork..I finally left St.V's alone. My heart was hurting and my eyes were swollen and I just felt numb. I was able to go back at 6:15 for visiting hours and to bring him clothes. We had a good visit. It was a little rocky at first and because of his attitude, I almost had to leave. He pulled it together and we were able to have a nice, positive, healthy visit. He was scared and wanted me to take him home but he know I couldn't. He's done this once before so he does know the drill. He's really upset though that they wouldn't let him have his favorite stuffed animal that he takes with him everywhere.. We agreed to let the Dr's take care of him and let Kitty stay home and take care of me. :) I know this is the right thing to do and it did have to be done but why does the right thing feel like the worst thing in the world? I know this will help him and hopefully bring my sweet, caring, loving boy home to me. I just have to stay strong for him and let him know this is a good thing and that we both have to be OK with it. So I saved my tears for after the visit but basically cried the whole way home. Tonight I am going to (try) and sleep and then tomorrow I will wake up, not have to get him up and off to school, go to work and pretend to care about being there. I am able to visit him everyday he is there so as I pretend to care about work tomorrow, all I will be doing is counting down the clock until it's time to leave and go visit him.
I don't know what to do or how to feel. My friends have noticed I am not as active on Facebook lately and have started to ask questions. ( those who know me, know I am on their a lot!). Is it wrong of me that I am wanting to avoid seeing all my friends lives progress and move on.. The highlights of their days, the stories about their kids? I love my friends and would never want them to not be able to experience these things.. I just can't see it right now.. I can't get on FB and post statuses about how I feel or about my kid being a patient at 10 years old in a stress center for the second time in his life.. I don't want the pity or the sympathy or the "I don't know how you can do it" comments. I'm sure this makes me a horrible person but that's who I am right now.. I know this is the right thing to do and it's whats best for him. That's whats most important to me!!! I can't pretend that everything is ok and all normal and zippity doo dah right now! I will remain strong for him and I promise that I won't do anything stupid to jeopardize myself or my health. For now, that's all I can promise..
Good Night. Tomorrow is another day!!!
Thursday, September 30, 2010
Wednesday, September 22, 2010
Time to hit the dartboard again
Oh holy frustration Batman!!! Soo much going on lately, it's been hard to keep up. Seems like we may be past the suspensions from school for now and have been in for 4 days with little or no issues. Just had our first issue in after school care today. Went to the Doctor on Saturday to talk about everything that has happened since Labor Day and he was unresponsive and not at all helpful!!! It's time to move on. Now to find a new Doctor. However, in finding a new Doctor, we face the challenge of possibly a new diagnosis. I am fed up and frustrated with this nonsense. You would think since it was medical it's pretty cut and dry. They all go to school, they all study the same information. If your sick the Doctor is supposed to know whats wrong and how to fix it. We have been calling around to a few new places and basically have come to the conclusion that he needs to be re-evaluated, and possibly involved in some sort of out patient or intensive program.
We also agreed to try the assessment piece of the Brain Balance Program and well the first part of the assessment upset him and he walked out with 30 minutes left to complete it. He did better for the second part but started to get frustrated near the end. His meds have put on soo much weight that he pretty much failed the physical part of the assessment. Now I am waiting on the results of that to determine whats next. They are also supposed to work up a dietary piece and a supplement created just for him.
So now I am questioning everything of course.. Is the diagnosis right? Is the medicine really working?? Did we pick the right school? Do I put him in the hospital? HELP ME HELP HIM!!!!
Who has the right answers? If we switch Doctors, how will I know if they are right or wrong? We've been at this since he was 4 years old, been through 6-7 Doctors and countless Diagnosis changes. I can't even count how many times we've switched meds and later found out it was the meds that were really what was making him worse!!! WHAT AM I DOING TO MY CHILD!!!!
He can't sleep at night, can't wake up in the morning. Doesn't want to do his school work and blows up at the slightest things.. I soo wish I could fix this for him and not have to watch him struggle through all of this. I hate that I cannot make this right for him.
If I had my way (and about $1 million dollars) here is what I would like to do. I want to start a foundation/center for Children with Bipolar Disorder ( or behavior disorders or whatever we are going to call what he has... WHO KNOWS)... and for it to include grants, scholarships, for parents to apply for so they don't have to worry about the cost of medical care, treatments or medications. I'd also like to have a before/after school and even a school center for kids who can't function in regular school and a short term residential care piece where they can be monitored and cared for. I know that bits and pieces of these places exist but for a grander scheme. I want it isolated to certain Diagnosis/Behavior Issues. I also want a library/resource center and parent and child support groups, as well as therapy for the child and the family. All in one place! Is that asking to much? I just need a building, teachers, doctors, volunteers and a staff right?? Sure, as long as I continue to wear my rose colored glasses!
As frustrating as this is for me, I can only imagine how hard this is for my child. I know he's in there somewhere and someday I really hope to find him again!!! I just know that I will never stop looking, no matter what!!
We also agreed to try the assessment piece of the Brain Balance Program and well the first part of the assessment upset him and he walked out with 30 minutes left to complete it. He did better for the second part but started to get frustrated near the end. His meds have put on soo much weight that he pretty much failed the physical part of the assessment. Now I am waiting on the results of that to determine whats next. They are also supposed to work up a dietary piece and a supplement created just for him.
So now I am questioning everything of course.. Is the diagnosis right? Is the medicine really working?? Did we pick the right school? Do I put him in the hospital? HELP ME HELP HIM!!!!
Who has the right answers? If we switch Doctors, how will I know if they are right or wrong? We've been at this since he was 4 years old, been through 6-7 Doctors and countless Diagnosis changes. I can't even count how many times we've switched meds and later found out it was the meds that were really what was making him worse!!! WHAT AM I DOING TO MY CHILD!!!!
He can't sleep at night, can't wake up in the morning. Doesn't want to do his school work and blows up at the slightest things.. I soo wish I could fix this for him and not have to watch him struggle through all of this. I hate that I cannot make this right for him.
If I had my way (and about $1 million dollars) here is what I would like to do. I want to start a foundation/center for Children with Bipolar Disorder ( or behavior disorders or whatever we are going to call what he has... WHO KNOWS)... and for it to include grants, scholarships, for parents to apply for so they don't have to worry about the cost of medical care, treatments or medications. I'd also like to have a before/after school and even a school center for kids who can't function in regular school and a short term residential care piece where they can be monitored and cared for. I know that bits and pieces of these places exist but for a grander scheme. I want it isolated to certain Diagnosis/Behavior Issues. I also want a library/resource center and parent and child support groups, as well as therapy for the child and the family. All in one place! Is that asking to much? I just need a building, teachers, doctors, volunteers and a staff right?? Sure, as long as I continue to wear my rose colored glasses!
As frustrating as this is for me, I can only imagine how hard this is for my child. I know he's in there somewhere and someday I really hope to find him again!!! I just know that I will never stop looking, no matter what!!
Wednesday, September 15, 2010
The Good, the Bad & the UGLY.
Sorry for slacking on the blog posts this past week. It's been a little crazy/hectic around here. I had been bragging for weeks how well he was doing and that we hadn't had any issues, outbursts or anything, then the bottom dropped out. Well ok, not quite that dramatic but still. In the life of Bipolar it just seems to fit right? After Labor Day weekend, his first day back to school we started having trouble with him falling asleep in class. It caused an issue when they tried to wake him up to actually participate in class and do his work. Shocking, I know! Well, after the agitation and outburst, we ended up with a teacher with a broken toe and 2 days of In School Suspension. On day 2 of ISS, he slept all morning and when he woke up refused to do work. When they wouldn't let him have lunch until he did some of his work, outburst ensued and Mom was called. In School Suspention just turned into a day and a half of Out of school suspension. We called the doctor to discuss meds and to see about altering the times and dosages. We decided to try and go without the melatonin. It worked until Sunday night. We had a great rest of the day on Thurday, and the weekend he was great. Sunday night, he barely slept at all, and against my better Mommy judgement, I sent him to school. What was I supposed to do? Call him in and tell them he was too tired to come to school? School said I did the right thing by sending him, but called me an hour later and had me come get him AGAIN. This time they had to call the school cop for assistance. It took 45 minutes after I got there for him to calm down enough for me to take him home. He had to go into the quiet room and was trying to hurt himself so we had to restrain him. I don't know about your kids, but restraining mine is the WORST thing you could do to him in his eyes. He FLIPS out and goes all kinds of crazy mental. Screams, cries, cusses, kicks, bites or whatever else he can do and try and get free. It's the worst thing as a mother to see him go through that but I know it's for his own safety as well as anyone around him. Of course, I was trying to keep it together but by this time I was crying too. I just wanted to protect him, and get him home. The school cop was nice enough to follow us home to make sure he remained calm and then even talked to him for a bit once we got home.
Over the past 2 days, I have been working on his school work with him that they sent home for him to do. I discovered 2 things. I could never be an elementary school teacher and I could never home school. He seems to think that he can't do any work unless I am right there at the table keeping him focused and helping him. He definately doesn't need my help with the work, he just doesn't want to do it.
Also, in times like this, I never know exactly what to do or how to handle the situation. Do I punish him for being suspended or is that punishment enough? Do I revoke privledges? How long? This series of outbursts is because of medications, I believe, so as we are adjusting them, is it his fault somewhat? To what extent? I struggle with this soo much and really just can't seem to find the right answers to this one. Do you punish a child because his mental state is so messed up he doesn't always make the right choices? how much of this can he really control? Is it his fault? Does the punishment really fit the crime? Does it work? Is it effective? How can I punish him and not get him so worked up that it causes another outburst? Once he's calmed down, do I punish him for something he did 2 hours ago and was able to calm himself down, on his own? Or do I reward that part? I don't like what you did, but the fact that you controlled it and came out of it, well thats something, right???
I know that HE is the one who really struggles with the Bipolar but I really am convinced that the parents have their own struggle/fight aside from the one the child deals with constantly. Sometimes I feel like I need a medication for being the mother of a Bipolar Child, or therapy for how to deal with a bipolar child/parenting a bipolar child while he gets therapy as well. This illness doens't just effect the person who has it. Sometimes I wonder why God chose me to be Jakes mom but then I realize that he must have had enough faith in me to know that I could handle it. He knew that Jake needed me. I am proud to be his mom and would not trade him or the life we live for anything else in the world.
We are still to the point where we have more good times than bad, which is a total 180 from a few years ago. He is a brilliant child who is loving, caring and super sweet. He is helpful (when he wants to be of course) and still manages to surprise and amaze me with the things he does on occasion without ever being asked.
Over the past 2 days, I have been working on his school work with him that they sent home for him to do. I discovered 2 things. I could never be an elementary school teacher and I could never home school. He seems to think that he can't do any work unless I am right there at the table keeping him focused and helping him. He definately doesn't need my help with the work, he just doesn't want to do it.
Also, in times like this, I never know exactly what to do or how to handle the situation. Do I punish him for being suspended or is that punishment enough? Do I revoke privledges? How long? This series of outbursts is because of medications, I believe, so as we are adjusting them, is it his fault somewhat? To what extent? I struggle with this soo much and really just can't seem to find the right answers to this one. Do you punish a child because his mental state is so messed up he doesn't always make the right choices? how much of this can he really control? Is it his fault? Does the punishment really fit the crime? Does it work? Is it effective? How can I punish him and not get him so worked up that it causes another outburst? Once he's calmed down, do I punish him for something he did 2 hours ago and was able to calm himself down, on his own? Or do I reward that part? I don't like what you did, but the fact that you controlled it and came out of it, well thats something, right???
I know that HE is the one who really struggles with the Bipolar but I really am convinced that the parents have their own struggle/fight aside from the one the child deals with constantly. Sometimes I feel like I need a medication for being the mother of a Bipolar Child, or therapy for how to deal with a bipolar child/parenting a bipolar child while he gets therapy as well. This illness doens't just effect the person who has it. Sometimes I wonder why God chose me to be Jakes mom but then I realize that he must have had enough faith in me to know that I could handle it. He knew that Jake needed me. I am proud to be his mom and would not trade him or the life we live for anything else in the world.
We are still to the point where we have more good times than bad, which is a total 180 from a few years ago. He is a brilliant child who is loving, caring and super sweet. He is helpful (when he wants to be of course) and still manages to surprise and amaze me with the things he does on occasion without ever being asked.
Thursday, September 9, 2010
The Big Red Binder
As previously promised, here is the contents to the Big Red Binder. I usually update the blog while at work (shh don't tell anyone) and don't have the binder with me. But due to some medicine complications my son and I are spending the next 2 days at home.
Apparently on Tuesday, he had some issues with sleeping in class which inadvertently led to him having an outburst, getting upset and hurting a teacher. Result- 2 day in school suspension. Yesterday- day 1 of ISS- he told me he slept off and on most of the day. Today, apparently he slept ALL morning. So none of his work was getting done, ( and of course it ALL got sent home for us to complete). He finally woke up and wanted lunch. They told him, no lunch until you get some work done, which resulted in a meltdown. Shortly after, I get the call to come get him only to find out that it's for the rest of today and tomorrow as well. Work is really gonna love that!!! NOT! But what else can I do?
I am waiting on a call from his doctor to maybe adjust some dosages and we are also going to try and go without the melatonin at night for a few days. If that doesn't work, they I will start him on a lower dosage of that as well.
So on to the Big Red Binder.
Section 1 About Bipolar Disorder
Section 2 Treatment, Therapy & Med's
Section 3 Parenting
Section 4 School
Other than having several pieces I've found on the Internet, (which I will share some of the sights later) Here are the 5 books (so far) that are in the binder broken up by chapters into the sections listed above.
Bipolar Disorder- A guide for Patients & Families by Francis Mark Mondimore MD
What Works for Bipolar Kids - Help and Hope for Parents by Mani Pavuluri, MD, PhD
Parenting a Bipolar Child- What to do and Why by Gianni L Faedda MD & Nancy B Austin Psy.D
New Hope for Children & Teens with Bipolar Disorder by Boris Birmaher, MD
The Ups & Downs of Raising a Bipolar Child - A Survival Guide for Parents by Judith Lederman & Candida Fink MD
I pretty much have the basic stuff in the About Bipolar and the Treatment sections. Chapters that discuss the diagnosis and all of the various treatment options including med's & therapies.
I skipped over a lot of the first parts of each book that all talked about, so you think you might have Bipolar, Now what?? Well, we already know we have it..
Under the Parenting Section, I have chapters like The Role of the Family, The Structure of Daily Life, Relationships, Parenting with Poise: The Secret Ingredient for Success, Keeping the Peace at Home, Building Social Skills for Positive Friendships, Living with a Bipolar Child, Irritability:What to do?, & Managing your child's behavior problems. (Hello Run-on sentence)..
Under the School Section, I included chapters and information on Finding the Best School Setting & Programs for your child, Forming a Partnership with your Child's Teacher, School Decisions & Solving Your Child's Academic Problems.
A lot of the information is the same even from book to book but it's nice to get different perspectives on things when it comes to Childhood Bipolar. One thing we learn early on, there is no ONE prominent cure or treatment and what works for one child, may not work for another. I also like to get the perspectives from both Doctors and Parents on these issues. Sometimes the parents are the better experts on this than the Doctors are.
Some other books in my personal Bipolar Library (not in the Big Red Binder) are:
Your Defiant Child- 8 Steps to better behavior by Russell A Barkley PhD & Christine M Benton
The Everything Parents Guide to Children with Bipolar Disorder by William Stillman
Transforming the Difficult Child- The Nurtured Heath Approach by Howard Glasser & Jennifer Easley
I also have a workbook called Helping Your Angry Child- A workbook for you and your family which includes worksheets, fun puzzles & engaging games to help you communicate better.
Another thing I really like is that there are actually Kids books out there on Childhood Bipolar and anger problems. Books that kids can read to help them better understand what is going on with them. We have a few..
How to take the Grrr out of Anger by Elizabeth Verdick & Marjorie Lisovskis
If Your Angry and you Know it by Cecily Kaiser
Brandon & the Bipolar Bear
Stress Relief for Kids - Taming Your Dragons by Martha Belknap
I also have a handful of other books on Defiance, ADHD, Anger, etc. Have I read them all? No Way!!! I reference them a lot on occasion, then I forget about them for a long time and think oh yeah, I have all these books so I look through a few of them again. I've also recently discovered an abundance of information on the Internet. But that is a blog for another day.. Hope this helps a little bit for those of you out there looking for a little more information and a lot more help!!! Do you need ALL these books? Nope, probably not. As I stated before a lot of them pretty much say the same things, especially the medical ones. But I am starting to branch out a bit here recently and I am starting to do a lot more research on the more NATURAL approaches for treating Bipolar Disorder in Children. I will keep you posted on what I find out and if any of you out there are currently using any alternative forms of med's or treatments, I would love to hear about it. Do you have a favorite book you like to refer to? A favorite website? Please share that as well.
As the blog progresses, I will take sections from the Big Red Binder, focus on certain books and or chapters and I will continue to share my stories of our day to day life. I will also share websites and links as well.
Apparently on Tuesday, he had some issues with sleeping in class which inadvertently led to him having an outburst, getting upset and hurting a teacher. Result- 2 day in school suspension. Yesterday- day 1 of ISS- he told me he slept off and on most of the day. Today, apparently he slept ALL morning. So none of his work was getting done, ( and of course it ALL got sent home for us to complete). He finally woke up and wanted lunch. They told him, no lunch until you get some work done, which resulted in a meltdown. Shortly after, I get the call to come get him only to find out that it's for the rest of today and tomorrow as well. Work is really gonna love that!!! NOT! But what else can I do?
I am waiting on a call from his doctor to maybe adjust some dosages and we are also going to try and go without the melatonin at night for a few days. If that doesn't work, they I will start him on a lower dosage of that as well.
So on to the Big Red Binder.
Section 1 About Bipolar Disorder
Section 2 Treatment, Therapy & Med's
Section 3 Parenting
Section 4 School
Other than having several pieces I've found on the Internet, (which I will share some of the sights later) Here are the 5 books (so far) that are in the binder broken up by chapters into the sections listed above.
Bipolar Disorder- A guide for Patients & Families by Francis Mark Mondimore MD
What Works for Bipolar Kids - Help and Hope for Parents by Mani Pavuluri, MD, PhD
Parenting a Bipolar Child- What to do and Why by Gianni L Faedda MD & Nancy B Austin Psy.D
New Hope for Children & Teens with Bipolar Disorder by Boris Birmaher, MD
The Ups & Downs of Raising a Bipolar Child - A Survival Guide for Parents by Judith Lederman & Candida Fink MD
I pretty much have the basic stuff in the About Bipolar and the Treatment sections. Chapters that discuss the diagnosis and all of the various treatment options including med's & therapies.
I skipped over a lot of the first parts of each book that all talked about, so you think you might have Bipolar, Now what?? Well, we already know we have it..
Under the Parenting Section, I have chapters like The Role of the Family, The Structure of Daily Life, Relationships, Parenting with Poise: The Secret Ingredient for Success, Keeping the Peace at Home, Building Social Skills for Positive Friendships, Living with a Bipolar Child, Irritability:What to do?, & Managing your child's behavior problems. (Hello Run-on sentence)..
Under the School Section, I included chapters and information on Finding the Best School Setting & Programs for your child, Forming a Partnership with your Child's Teacher, School Decisions & Solving Your Child's Academic Problems.
A lot of the information is the same even from book to book but it's nice to get different perspectives on things when it comes to Childhood Bipolar. One thing we learn early on, there is no ONE prominent cure or treatment and what works for one child, may not work for another. I also like to get the perspectives from both Doctors and Parents on these issues. Sometimes the parents are the better experts on this than the Doctors are.
Some other books in my personal Bipolar Library (not in the Big Red Binder) are:
Your Defiant Child- 8 Steps to better behavior by Russell A Barkley PhD & Christine M Benton
The Everything Parents Guide to Children with Bipolar Disorder by William Stillman
Transforming the Difficult Child- The Nurtured Heath Approach by Howard Glasser & Jennifer Easley
I also have a workbook called Helping Your Angry Child- A workbook for you and your family which includes worksheets, fun puzzles & engaging games to help you communicate better.
Another thing I really like is that there are actually Kids books out there on Childhood Bipolar and anger problems. Books that kids can read to help them better understand what is going on with them. We have a few..
How to take the Grrr out of Anger by Elizabeth Verdick & Marjorie Lisovskis
If Your Angry and you Know it by Cecily Kaiser
Brandon & the Bipolar Bear
Stress Relief for Kids - Taming Your Dragons by Martha Belknap
I also have a handful of other books on Defiance, ADHD, Anger, etc. Have I read them all? No Way!!! I reference them a lot on occasion, then I forget about them for a long time and think oh yeah, I have all these books so I look through a few of them again. I've also recently discovered an abundance of information on the Internet. But that is a blog for another day.. Hope this helps a little bit for those of you out there looking for a little more information and a lot more help!!! Do you need ALL these books? Nope, probably not. As I stated before a lot of them pretty much say the same things, especially the medical ones. But I am starting to branch out a bit here recently and I am starting to do a lot more research on the more NATURAL approaches for treating Bipolar Disorder in Children. I will keep you posted on what I find out and if any of you out there are currently using any alternative forms of med's or treatments, I would love to hear about it. Do you have a favorite book you like to refer to? A favorite website? Please share that as well.
As the blog progresses, I will take sections from the Big Red Binder, focus on certain books and or chapters and I will continue to share my stories of our day to day life. I will also share websites and links as well.
Wednesday, September 8, 2010
Miracle Cures & Treatments? How far will you go to find one?
OK so I went to an information meeting at a place called Brain Balance today to see if this new program that promises positive results, says no more med's and that it can be reversed was right for Jake and I. We toured the facility and the person giving us the tour was very informative. We even got a free book called Disconnected Kids. The author is the creator of the program. There are only a handful of centers nationwide currently and it's still in experimental stages so insurance is not accepted. The program consists of a 2 part assessment and also includes a blood and urine work up to test levels of certain chemicals that may be lacking or increased due to the disorders and med's. My friend, who went with me felt the program was not right for her and her son, I am still not so sure. It's a 12 week program that they have to attend 3 times a week and the cost is only a whopping $6000!!!
This brings me to today's topic of discussion. If your child suffers from an illness like Bipolar Disorder or ADHD, how far do you go to get him help? How much money, time and energy do you put into it? A treatment program, a miracle drug or even better a supplement you can use INSTEAD of med's? Yes this one is only 12 weeks and in the long scheme things, that is not that long. What if the program needs more time? What if it's not effective? I know there is no guarantee and that we cannot hold back or shy away from these things but what do you do? As a single mother who can't even barely afford to buy food AND make her house payment, can I really afford $6000? If I say no to this program because of the money, am I keeping my child from something that could really help him? He would practically have to miss 2 days of school just for the assessment and then come in for the program 3 times a week. I would love to know some of the things that the assessment will provide and to see about his diet and if he has any other issues based on the blood/urine draw but is there another way for me to get this info? We did the allergy thing about 5-6 years ago. Maybe it's time to do it again. If I knew what the urine and blood test were testing/looking for, I suppose I could have the same tests ran by his doctor. The other thing about this new program is that after all the tests are run, they draw up a diet plan and send the test results to a lab somewhere and they create a powder supplement just for him based on the results. How cool is that! A supplement that is for HIM!!!
But the main focus of this program is ADHD and other neurological disorders like Autism. How will this affect his Bipolar? If the ADHD is under control ,will the Bipolar side quiet a bit? Or will it be worse?
We have also discussed the full time long care facilities for him in the past. However, this is another issue for me that I always struggle with. If it ever comes down to having to make that choice, we do not live near one and I would have to ship my kid off to another state alone to live and go to school in an institution type facility. I would be able to visit but not very often and I wouldn't be able to afford the travel or the time off. Let alone be able to afford the facility.
Am I holding him back? Can I do what needs to be done here? Is this out of my hands? Should money and proximity limit me on treatments for him?
We have switched doctors and med's so many times. The doctors always try to sway me away from anything that is "natural" and want to push the med's and their treatments. Yet supplements are better for you/your body and are natural! If there is a program that teaches you how to train your brain to focus and helps you figure out why you are the way you are, wouldn't you want to give it a try? Should you not be able to do this because you can't afford the program? What is that saying? Only rich people can get better or be treated? Yes I know the doctors need to be paid and all that but why on earth do they have to charge so much money for it. Not only that but Insurance sucks for these kids too. It only covers a small amount of visits and they always need more. They cost of med's for Bipolar and ADHD are crazy insane.
This is the one constant battle I have with myself over the Bipolar issues. I can control how I parent him. I can control him ( sometimes) when he rages out. I can control where he goes to school and what doctors he does go to (sort of)! But this I cannot control and I hate that! I want him to have the best doctor, the best care, the best med's, the best treatment but I'm not sure how far to go to get it! I know that I would do ANYTHING in my power to make sure he gets all these things and if there is a way for it to be done, I will find it! He is not going to suffer or struggle because of money, proximity and time. He is my priority, he comes first. No I won't be robbing any banks anytime soon! Also I hope that I have an understanding employer who allows me time off work without the fear of loosing my job & the insurance. Which so far, has been the case.
I would love to hear form others who are in this struggle or if they have found the Miracle cure/drug/treatment? Let me know!
This brings me to today's topic of discussion. If your child suffers from an illness like Bipolar Disorder or ADHD, how far do you go to get him help? How much money, time and energy do you put into it? A treatment program, a miracle drug or even better a supplement you can use INSTEAD of med's? Yes this one is only 12 weeks and in the long scheme things, that is not that long. What if the program needs more time? What if it's not effective? I know there is no guarantee and that we cannot hold back or shy away from these things but what do you do? As a single mother who can't even barely afford to buy food AND make her house payment, can I really afford $6000? If I say no to this program because of the money, am I keeping my child from something that could really help him? He would practically have to miss 2 days of school just for the assessment and then come in for the program 3 times a week. I would love to know some of the things that the assessment will provide and to see about his diet and if he has any other issues based on the blood/urine draw but is there another way for me to get this info? We did the allergy thing about 5-6 years ago. Maybe it's time to do it again. If I knew what the urine and blood test were testing/looking for, I suppose I could have the same tests ran by his doctor. The other thing about this new program is that after all the tests are run, they draw up a diet plan and send the test results to a lab somewhere and they create a powder supplement just for him based on the results. How cool is that! A supplement that is for HIM!!!
But the main focus of this program is ADHD and other neurological disorders like Autism. How will this affect his Bipolar? If the ADHD is under control ,will the Bipolar side quiet a bit? Or will it be worse?
We have also discussed the full time long care facilities for him in the past. However, this is another issue for me that I always struggle with. If it ever comes down to having to make that choice, we do not live near one and I would have to ship my kid off to another state alone to live and go to school in an institution type facility. I would be able to visit but not very often and I wouldn't be able to afford the travel or the time off. Let alone be able to afford the facility.
Am I holding him back? Can I do what needs to be done here? Is this out of my hands? Should money and proximity limit me on treatments for him?
We have switched doctors and med's so many times. The doctors always try to sway me away from anything that is "natural" and want to push the med's and their treatments. Yet supplements are better for you/your body and are natural! If there is a program that teaches you how to train your brain to focus and helps you figure out why you are the way you are, wouldn't you want to give it a try? Should you not be able to do this because you can't afford the program? What is that saying? Only rich people can get better or be treated? Yes I know the doctors need to be paid and all that but why on earth do they have to charge so much money for it. Not only that but Insurance sucks for these kids too. It only covers a small amount of visits and they always need more. They cost of med's for Bipolar and ADHD are crazy insane.
This is the one constant battle I have with myself over the Bipolar issues. I can control how I parent him. I can control him ( sometimes) when he rages out. I can control where he goes to school and what doctors he does go to (sort of)! But this I cannot control and I hate that! I want him to have the best doctor, the best care, the best med's, the best treatment but I'm not sure how far to go to get it! I know that I would do ANYTHING in my power to make sure he gets all these things and if there is a way for it to be done, I will find it! He is not going to suffer or struggle because of money, proximity and time. He is my priority, he comes first. No I won't be robbing any banks anytime soon! Also I hope that I have an understanding employer who allows me time off work without the fear of loosing my job & the insurance. Which so far, has been the case.
I would love to hear form others who are in this struggle or if they have found the Miracle cure/drug/treatment? Let me know!
Tuesday, September 7, 2010
New Experiences & Hopeful Change
Sorry it's been awhile since my last post. I know that I promised you a blog about All things Bipolar and that I was going to focus on the 4 key elements that each person/parent/diagnosed person should know. In an earlier blog, I said I would focus on parenting and school since I was in no way shape or form on expert on the subject to provide any type of profound insight on the disorder itself. Jake has it, we don't know why. We treat it with med's and hope we find some that work. That's about all I got. I can go through our med's checklist and tell you what did and didn't work for him but that's not going to help much either since med's never work the same way for kids or even adults. My parenting advice will also be one sided as I am a single mother who has to work 40 hours a week to support her child and keep the medical insurance necessary to treat him. I cannot stay home with him in the summer or after school and when things get too hard for me to handle, I can't walk away and tell the other parent, "It's your turn!" But I will share stories, experiences and any information that I am able to find on the subject. I will share my resources and ask for you to do the same.
First a small recap of how things have been at school and Casa De Wilkerson. We have had a string of good weeks at home with NO outbursts, violent behavior or destruction. He has been pleasant and helpful. We are still working on getting a good bedtime and wake up time down for the school routine but that is also getting MUCH better. He is a lot easier to get up in the mornings now and it not so grumpy about it. For awhile it was hard to keep him up till 7 pm because he was so tired from his day. Now, we are getting to sleep between 8:30-9 and still doing well with getting up in the morning. School has been going well also. His weekly progress reports have continued to improve. He went from a 68% his first week to an 88% for week 2 and a 93% for week 3!!! His teachers all have positive things to say about him and he is even starting to make friends. He is playing with them and sitting with them at lunch! One of the biggest changes between his old and new school is the way his ED program s were structured. In the old school he was in an ED room all day and went out for 2-3 classes and specials. On bad days he was in there all day. At the new school, he is in regular classes all day and only has to go to the Ed room when necessary. His grades are good too.
However as I am typing this telling you all how good he has been doing, I get the call from school, saying I need to go pick him up because he was having a rough day. I will write more later.
OK so we are home now and he is in a calm down period trying to pull himself back together. He was off to a good start this morning and it went downhill from there apparently because of not wanting to do some work. It escalated and got worse throughout the day and he is going to have ISS for the next 2 days. He seems to be coming out of it and is not displaying the violent behaviors now that he is home. Hopefully I will be able to get him to complete his homework later and not send him right back into a mood.
OK so back to our regular scheduled blog...
Tomorrow I am going to a meeting to learn about a possible new program that may solve all our problems ( yeah, yeah, I know.. .TGTBT right??). Well hey, at this point, I will try just about anything within reason if it will help him succeed and get better. I will go into detail about the program tomorrow after the info meeting. A friend of mine is going with me so hopefully we aren't being scammed or suckered into anything.. But we'll see so stay tuned. If this works, it could mean no more med's and it could give us the answers to a lot of unanswered questions.
I've also been trying to get him to start showing some interest in some school or after school programs, we've been talking a lot about choir and I would like to see him join this and try it out. So far, no such luck. Also, there has not been any after school programs that he's shown an interest in either. He uses music a lot to help calm him down and he lives to sing and listen to music. I think it would be really good for him. But yes, I know, it's ultimately his decision and whatever he decides, I will stand behind.
Having the support system that I do in my family & friends (well some of them anyways) is really important to me. However, having a support system of people who are in the same boat that I am has been a godsend. Knowing that they go through the same thing I do, feel the same pains I feel has helped me a lot. For the longest time I felt I was the only one. There is a Yahoo group for Indiana Bipolar Parents and there are emails on a daily basis from parents asking the group questions about med's, doctor recommendations, behavior modification and just about anything and everything. I also get regular emails on both ADHD and Bipolar on a daily basis. There is even a Facebook page for Parents of Bipolar Children (& comorbid diagnoses).
Amazon.com, Borders/Barnes & Noble and the local Library are all great resources for books on Bipolar Disorder as well.
Thanks to all of these outlets, I feel more comfortable with being the parent of a child who has Bipolar Disorder. I don't feel alone anymore and I am starting to get a handle on how to be an effective parent to him as well. I am still learning where to draw that fine line between walking on eggshells so he doesn't get upset and keeping that strong firm hand as a parent to punish him when things don't go his way. Also, I had to learn when to punish him and what to punish him for. You cannot punish a bipolar child in the middle of a rage. That usually just makes things worse. If you don't punish at all, well then they just get to the point where they feel they rule the roost and can get away with anything because you are afraid to punish them for fear it will cause another rage. Sometimes I feel bad for punishing him after he is able to come out of a rage on his own. Thats a huge accomplishment for a child like him. "Hey kiddo, great job on pulling yourself out of that.. oh and by the way you're grounded from tv for the next week." Not always an easy thing to do.. but each day I am learning. I am proud that he has had so many good days lately and that he has been doing so well in school. I can handle one bad afternoon out of 10!!! It used to be the other way around. He is making progress and growing up. Do I expect miracles from him? Nope. I know there will be bad days. It's inevitable. But what is important is that we both know how to handle them when they happen.
First a small recap of how things have been at school and Casa De Wilkerson. We have had a string of good weeks at home with NO outbursts, violent behavior or destruction. He has been pleasant and helpful. We are still working on getting a good bedtime and wake up time down for the school routine but that is also getting MUCH better. He is a lot easier to get up in the mornings now and it not so grumpy about it. For awhile it was hard to keep him up till 7 pm because he was so tired from his day. Now, we are getting to sleep between 8:30-9 and still doing well with getting up in the morning. School has been going well also. His weekly progress reports have continued to improve. He went from a 68% his first week to an 88% for week 2 and a 93% for week 3!!! His teachers all have positive things to say about him and he is even starting to make friends. He is playing with them and sitting with them at lunch! One of the biggest changes between his old and new school is the way his ED program s were structured. In the old school he was in an ED room all day and went out for 2-3 classes and specials. On bad days he was in there all day. At the new school, he is in regular classes all day and only has to go to the Ed room when necessary. His grades are good too.
However as I am typing this telling you all how good he has been doing, I get the call from school, saying I need to go pick him up because he was having a rough day. I will write more later.
OK so we are home now and he is in a calm down period trying to pull himself back together. He was off to a good start this morning and it went downhill from there apparently because of not wanting to do some work. It escalated and got worse throughout the day and he is going to have ISS for the next 2 days. He seems to be coming out of it and is not displaying the violent behaviors now that he is home. Hopefully I will be able to get him to complete his homework later and not send him right back into a mood.
OK so back to our regular scheduled blog...
Tomorrow I am going to a meeting to learn about a possible new program that may solve all our problems ( yeah, yeah, I know.. .TGTBT right??). Well hey, at this point, I will try just about anything within reason if it will help him succeed and get better. I will go into detail about the program tomorrow after the info meeting. A friend of mine is going with me so hopefully we aren't being scammed or suckered into anything.. But we'll see so stay tuned. If this works, it could mean no more med's and it could give us the answers to a lot of unanswered questions.
I've also been trying to get him to start showing some interest in some school or after school programs, we've been talking a lot about choir and I would like to see him join this and try it out. So far, no such luck. Also, there has not been any after school programs that he's shown an interest in either. He uses music a lot to help calm him down and he lives to sing and listen to music. I think it would be really good for him. But yes, I know, it's ultimately his decision and whatever he decides, I will stand behind.
Having the support system that I do in my family & friends (well some of them anyways) is really important to me. However, having a support system of people who are in the same boat that I am has been a godsend. Knowing that they go through the same thing I do, feel the same pains I feel has helped me a lot. For the longest time I felt I was the only one. There is a Yahoo group for Indiana Bipolar Parents and there are emails on a daily basis from parents asking the group questions about med's, doctor recommendations, behavior modification and just about anything and everything. I also get regular emails on both ADHD and Bipolar on a daily basis. There is even a Facebook page for Parents of Bipolar Children (& comorbid diagnoses).
Amazon.com, Borders/Barnes & Noble and the local Library are all great resources for books on Bipolar Disorder as well.
Thanks to all of these outlets, I feel more comfortable with being the parent of a child who has Bipolar Disorder. I don't feel alone anymore and I am starting to get a handle on how to be an effective parent to him as well. I am still learning where to draw that fine line between walking on eggshells so he doesn't get upset and keeping that strong firm hand as a parent to punish him when things don't go his way. Also, I had to learn when to punish him and what to punish him for. You cannot punish a bipolar child in the middle of a rage. That usually just makes things worse. If you don't punish at all, well then they just get to the point where they feel they rule the roost and can get away with anything because you are afraid to punish them for fear it will cause another rage. Sometimes I feel bad for punishing him after he is able to come out of a rage on his own. Thats a huge accomplishment for a child like him. "Hey kiddo, great job on pulling yourself out of that.. oh and by the way you're grounded from tv for the next week." Not always an easy thing to do.. but each day I am learning. I am proud that he has had so many good days lately and that he has been doing so well in school. I can handle one bad afternoon out of 10!!! It used to be the other way around. He is making progress and growing up. Do I expect miracles from him? Nope. I know there will be bad days. It's inevitable. But what is important is that we both know how to handle them when they happen.
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