Wanted to do some sharing today of some really helpful resources I use or that I have come across. Today's resources are all available online.
The biggest one I want to share is http://www.bpkids.org/ for CABF- Child & Adolescent Bipolar Foundation. They are a wonderful website full of resources, educational materials, support groups, chat rooms and a family response team. I am a chat room moderator and a member of the FRT. They are also involved in the Pepsi Refresh Project currently in the running for a $250 grant. There are over 5 million U.S. youth who live with depression or bipolar disorder. Unfortunately, a very small percentage receive treatment. CABF will use the grant from Pepsi to raise public awareness and help more youth who suffer from depression or bipolar disorder. Please visit the site and remember to vote. We have 2 weeks left and are already up to 5th place. There are 3 ways to vote every day.
Another great site for behavior charts which is very effective and helpful for these kids is http://handipoints.com/printable-chart/. You can print off charts for the kids to earn stickers or behavior points, etc. They also have charts for Chore's, Studying, Fitness, Hygiene,Health to help motivate them.
Here is a website with a Crisis Contract that you can complete online or print out and complete http://mindyourmind.ca/toolbox/self-management/coping-kit.
This is good for the child to have something in writing so they know consequences for behaviors and also coping skills to avoid them.
This is a local (Indiana) resource but it could be useful if you want to check it out. http://www.aboutspecialkids.org/Default.aspx. They are a good place for resources and they offer training courses.
WrightsLaw is a wonderful resource and from the website you can narrow it to your state. http://www.yellowpagesforkids.com/help/ptis.htm On this site you will be able to find Directory of Parent Training and Information Centers (PTI) and Community Parent Resource Centers (CPRC). This is a good resource for education and advocacy.
Another one affiliated with WrightsLaw and advocacy is http://www.wrightslaw.com/info/advo.index.htm. This one lays out all of the things a parent needs to know about being an advocate for their child.
Another one for steps to become a parent advocate for your child is http://specialed.about.com/od/iep/a/advocat.htm.
The Complete IEP Guide: How to Advocate for Your Special Ed Child can be found at http://www.thefreelibrary.com/The+Complete+IEP+Guide%3a+How+to+Advocate+for+Your+Special+Ed+Child.-a059644182
I don't know how many Facebookers we have out there.. but on Facebook some of my favorite pages for bipolar kids are: CABF,Empowering Parents, Parents of Bipolar Children and Comorbid diseases, life with a bipolar child, Bipolar Awareness- Stop the Stigma, NAMI (National Alliance on Mental Illness). Also I did find one for the kids to join as well.. Children dealing with Bipolar with the family unit. This page was created to help guide and support children dealing with bipolar within the family to give the kids somewhere to rant and rave about dealing with Bipolar.
But since the kid is home sick today and now asking for Mommy, it's time to sign off.. Hopefully, this list will get you started and I will add more later from books or other resources. If there is anything you would like more info or anything you need further research one just let me know!
Good Luck & stay tuned.
I had hoped the links would appear so that you could click on them but for some reason they didn't. So if you have trouble accessing them let me know and I will get the information to you another way.
Tuesday, November 16, 2010
Wednesday, November 10, 2010
Graduation Day & Bx Detox
Well we did it!!! OK so HE did it!! After 5 days in patient and 4 weeks with partial inpatient to intensive outpatient therapy and he graduated today.. I am soo proud of him!!! Yes I cried during his little ceremony. He picked out a prize and everyone went around the circle, held the prize and said something nice/positive about Jake. He is so happy too, it's so nice to actually hear him tell me that and I can see it in his face. I am hoping he will be able to maintain and keep up on all the things he's learned without the help of group therapy 3 days a week. Being around people who understand him, who know what he's been through. I know that this whole thing is far from over and this is just a "band-aide" but I reallt hope this one sticks for swhile. This is our seond trip to the hospital in 3 years and we are only a few years away from those "teen" years. We are not afraid of the hospital anymore and know it's there for us whenever we need it. We are meeting with 2 differnt therapists over the next few weeks to see which one is a better fit for him now that he is going to move on to 1 on 1 therapy. I am hopeful we can find a support group for him since he did sooooo well in the group dynamic. He's never been a big fan of the 1 on 1. Even if this one meets once a month or so and is for the whole family, that would work too.
As I was driving to pick him up from his last group session today from St Vincent Stress Center another one of my brilliant save the world ideas popped into my head. Too bad that this is not treated a little more like they treat alcoholism. You go thru the program and everything, go thru detox-- which he did.. a major behvior detox!! So my thinking to this was.. he needs a sponsor. Someone he can call when he's having a bad day, or feels like he wants to break something.. Not only that but he should get a chip for every "behavior free" day..(He would have his 30 day chip currently!!!) He made some good friends in the program and built a trust and a relationship with them.. and won't ever get to see them again. He barely has any friends as it is.. and especially none who really "get" him.. I know it's the hospital policy but it still kinda stinks..
So now begins the real test for him. I have faith in him and know he's going to try really hard and I will continue to do everything I can to help him, get myself educated more so I can arm him with everything possible. I am looking into advocacy classes, and I have put in an application to volunteer with CABF and I am waiting on a call to see if I can be on their Family Response Team. I have been pretty active on one of the CABF support groups recently and it's a great bunch of people. OH and I did find a facebook page for bipolar kids so I am hoping he will get involved in that too!
As I was driving to pick him up from his last group session today from St Vincent Stress Center another one of my brilliant save the world ideas popped into my head. Too bad that this is not treated a little more like they treat alcoholism. You go thru the program and everything, go thru detox-- which he did.. a major behvior detox!! So my thinking to this was.. he needs a sponsor. Someone he can call when he's having a bad day, or feels like he wants to break something.. Not only that but he should get a chip for every "behavior free" day..(He would have his 30 day chip currently!!!) He made some good friends in the program and built a trust and a relationship with them.. and won't ever get to see them again. He barely has any friends as it is.. and especially none who really "get" him.. I know it's the hospital policy but it still kinda stinks..
So now begins the real test for him. I have faith in him and know he's going to try really hard and I will continue to do everything I can to help him, get myself educated more so I can arm him with everything possible. I am looking into advocacy classes, and I have put in an application to volunteer with CABF and I am waiting on a call to see if I can be on their Family Response Team. I have been pretty active on one of the CABF support groups recently and it's a great bunch of people. OH and I did find a facebook page for bipolar kids so I am hoping he will get involved in that too!
Wednesday, November 3, 2010
One week til Graduation & The Pepsi Refresh Project
October is over and behind us. November is in full swing. We are one week away from graduating from the program at St Vincent's which we have been in since 9/30/10. To date, we have still not had any major blow ups, destroyed property or massive arguments. So Yippeee there!!! He will start one on one therapy about 2 weeks after he graduates so we will see how that goes. I really liked the group dynamic and I think he did to. He was always quick to participate and always wanted to offer up an answer or a suggestion. Plus we really got a lot out of the family therapy sessions as well. I am trying to find a group for him to be a part of after he graduates, even if they only meet once or twice a month. If I can't find one, maybe I'll figure out how to start one.. Which leads me to today's topics... Advocating and Educating. As parents of Bipolar/Mood Disorder kids, we struggle a lot with these issues between school, doctors, friends, family and just about any where else.
It has recently become clear to me on so many levels that both education and advocacy for this is very poor. Schools are not as well equipped as we like them to be, medical facilities for some reason are not all on the same page when it comes to it, and general public is pretty much just clueless.
If a child requires a long term care or a permanent residential type treatment, many families have to ship kids out of state, giving up pretty much any time of seeing their children unless they can afford weekend trips and a secondary place to stay while visiting. Which most of us cannot. Money is a huge factor as well, we can;t afford the insane costs of the doctor visits, which most of them need at least 2-4 times a month and lets not even forget the costs of the meds. Most kids are on a cocktail which can consist of 2-3 meds at a time, each one costing a few hundred dollars. Most insurance plans are not great with mental health. There are not many providers in this area and some parents will drive 2-3 hours to a doctor. This can take a toll on several things. Parent's jobs, relationships with a spouse or other children, and even friendships.
It is still a dream of mine to figure out a way to bring as much of this as close to home as I can. These kids need an environment they are comfortable in with teachers,care givers who are educated. We need to not have to drive several hours or ship our kids out of state. We need to not have to file bankruptcy in order to make sure our kids have meds and that the medical bills are not going to collections. This may not be a life threatening illness or disease but it is still very important. We have places like the Ronald McDonald House and Riley Hospital for those terminal patients, they offer parents places to stay while their kids are in treatment. Bipolar may not be terminal but it's pretty permanent or at least long term. This is something these kids will have to go through for most of or the rest of their lives. This isn't like a surgery where we take them in, have the procedure done and 4-6 weeks later, we are all better and going on with our lives. There is also very little published research on Pediatric and Adolescent Bipolar Disorder and what is out there is not very concrete. There are doctors out there who feel that you can diagnose this as early as 3 years old while others feel that it absolutely cannot be diagnosed until at least age 13. It's not as cut and dry as Cancer or other terminal or life threatening illnesses. With an illness, pretty much any doctor can look at you, run some tests, say yep you do or no you don't have it, then offer pretty concrete treatment options that will be the same where ever you decide to go for treatment. Yes OK, there are places out there with more extensive options or those places that deal with the clinical trials. I am not saying that Bipolar and Cancer should be looked at the same way or that having one is better or worse than having the other..So don't go getting all up in an uproar. My point is, if you have a broken bone, it gets fixed, if you rupture your appendix, they take it out, if you are diagnosed with Cancer, they put you on a treatment course. If that course doesn't work, they move on to another one. If you feel ill or are showing signs or symptons, they run tests, take Xrays, blood tests, etc. With Bipolar, mood disorders, the testing is primarily a bubble sheet questionairre where you answer questionos based on behaviors, environments, etc. These tests have no concrete intrepretation and depending on the day you fill it out, the outcome of the results could also vary. There is no X ray or blood test that will confirm a person has Bipolar disorder. Meds are also the primary treatment for this and with children, there are very little FDA approved prescription drugs that are approved for children and also meds affect kids differntly so a drug that works wonders on one kid may not work at all on another kid. There is a lot of arguments out there for "natural" or herbal treatments, or holistic approaches. There is not much research out there on this from a reiable source but more and more parents are looking into these to get away from the meds. The meds may work on the behaviors/moods but we end up messing with kidneys, thyroids, massive weight gain or loss or other long term health issues. So it's a vicious cycle and a lot of parents are at a loss on how to properly treat their children for something they may have to live with for the rest of their life.
OK so, as a part of being involved in a couple different parent or support groups, I have learned recently that CABF is competing for $250,000 in grant funding in the Pepsi Refresh Contest. Their main goal right now is to work with the blogger community to help secure funding for bipolar kids through the Pepsi Refresh Contest. So basically each time a blog like mine gets read and voted on, it helps CABF get closer to their goal of winning this grant. Having a grant like that could really help these kids out as well as helping the organization get the word out about advocating and education. I want Jake to be able to feel good about himself and know that what he has is something he can control, not something that can control him. I also want him armed with as much knowledge as he can have. He's only 11 now but soon will be a teenager, then a young adult where I won't always be there to advocate for him. He won't always be in a setting or situation where he will have an aide or where his day is goverened by an IEP.
Here is the actual release from CABF about their entry.
HELP CABF WIN $250,000 From Pepsi
CABF is in the running for a $250,000 grant from the Pepsi Refresh Project this month.
Winning this grant would transform CABF's ability to provide vital information and support services to children and families living with bipolar disorder and depression.
We can't win without you-- and you can help with just one minute every day. Winners are decided by total votes cast by Internet and text message votes throughout the month of November.
Sign up for a daily email voting reminder at http://www.bpkids.org/pepsi
and if CABF wins, a chance to win 1 of 3 iPads.
Vote today, ALL THREE WAYS, and every day in November:
Vote Online: Go to http://www.refresheverything.com/CABFhelpsmorekids. This will take you to the CABF Pepsi voting page. Click "Vote for this Idea". Register once and then you are all set.
Vote on Facebook: http://tiny.cc/cabfhelpsmorekids. The first time you vote via Facebook, you'll be asked for permission to access your information. Click "Allow". This will take you to the Pepsi Refresh Vote & Share application. You will see CABF's project below the search bar. Click "Vote for this Idea". (Be sure to click "share this idea" to encourage your friends to vote for us on Facebook. Do this every time you vote!) If you do not see our project, "type CABF" into the search bar.
Text your Vote: Text 104174 to PEPSI (73774) (Normal text rates apply).
What else can you do to get more votes for CABF?
•Bookmark our voting pages: http://www.refresheverything.com/CABFhelpsmorekids &http://tiny.cc/cabfhelpsmorekids. We need you to vote every day in the month of November. Anyone age 13 or older can vote. (Feel free to vote for other projects as well -- just not for any other projects which are also requesting a $250,000 grant).
•Tell your friends on Facebook by clicking this image: on the right hand column of the CABF voting page.
•FORWARD THIS EMAIL TO ALL YOUR FRIENDS, along with YOUR PERSONAL MESSAGE asking them to vote for CABF every day. Remember to ask your kids and their friends to vote.
•Print out flyer's and cards which you can give to friends. Hand them out at meetings, sporting events, etc.
Don't think you'll remember every day? No problem! Sign up for daily email reminders for a chance to WIN AN IPAD! If CABF wins the challenge, everyone who registered for a daily email reminder will have a chance to win one of three iPads.
Winning a $250,000 Pepsi Refresh grant would truly transform CABF's ability to provide support, information and hope to thousands more families.
WE NEED YOUR VOTES. REMEMBER - VOTING IS AS EASY AS 1- 2 - 3.
VOTE EVERY DAY, EVERY WAY
So take a minute to go check this out. Help me aide CABF in their quest to win this grant. I am also going to start working on some thing more local based in my community and do whatever I am able to do to get advocacy for my child and education for the public where he is supposed to grow and strive.
It has recently become clear to me on so many levels that both education and advocacy for this is very poor. Schools are not as well equipped as we like them to be, medical facilities for some reason are not all on the same page when it comes to it, and general public is pretty much just clueless.
If a child requires a long term care or a permanent residential type treatment, many families have to ship kids out of state, giving up pretty much any time of seeing their children unless they can afford weekend trips and a secondary place to stay while visiting. Which most of us cannot. Money is a huge factor as well, we can;t afford the insane costs of the doctor visits, which most of them need at least 2-4 times a month and lets not even forget the costs of the meds. Most kids are on a cocktail which can consist of 2-3 meds at a time, each one costing a few hundred dollars. Most insurance plans are not great with mental health. There are not many providers in this area and some parents will drive 2-3 hours to a doctor. This can take a toll on several things. Parent's jobs, relationships with a spouse or other children, and even friendships.
It is still a dream of mine to figure out a way to bring as much of this as close to home as I can. These kids need an environment they are comfortable in with teachers,care givers who are educated. We need to not have to drive several hours or ship our kids out of state. We need to not have to file bankruptcy in order to make sure our kids have meds and that the medical bills are not going to collections. This may not be a life threatening illness or disease but it is still very important. We have places like the Ronald McDonald House and Riley Hospital for those terminal patients, they offer parents places to stay while their kids are in treatment. Bipolar may not be terminal but it's pretty permanent or at least long term. This is something these kids will have to go through for most of or the rest of their lives. This isn't like a surgery where we take them in, have the procedure done and 4-6 weeks later, we are all better and going on with our lives. There is also very little published research on Pediatric and Adolescent Bipolar Disorder and what is out there is not very concrete. There are doctors out there who feel that you can diagnose this as early as 3 years old while others feel that it absolutely cannot be diagnosed until at least age 13. It's not as cut and dry as Cancer or other terminal or life threatening illnesses. With an illness, pretty much any doctor can look at you, run some tests, say yep you do or no you don't have it, then offer pretty concrete treatment options that will be the same where ever you decide to go for treatment. Yes OK, there are places out there with more extensive options or those places that deal with the clinical trials. I am not saying that Bipolar and Cancer should be looked at the same way or that having one is better or worse than having the other..So don't go getting all up in an uproar. My point is, if you have a broken bone, it gets fixed, if you rupture your appendix, they take it out, if you are diagnosed with Cancer, they put you on a treatment course. If that course doesn't work, they move on to another one. If you feel ill or are showing signs or symptons, they run tests, take Xrays, blood tests, etc. With Bipolar, mood disorders, the testing is primarily a bubble sheet questionairre where you answer questionos based on behaviors, environments, etc. These tests have no concrete intrepretation and depending on the day you fill it out, the outcome of the results could also vary. There is no X ray or blood test that will confirm a person has Bipolar disorder. Meds are also the primary treatment for this and with children, there are very little FDA approved prescription drugs that are approved for children and also meds affect kids differntly so a drug that works wonders on one kid may not work at all on another kid. There is a lot of arguments out there for "natural" or herbal treatments, or holistic approaches. There is not much research out there on this from a reiable source but more and more parents are looking into these to get away from the meds. The meds may work on the behaviors/moods but we end up messing with kidneys, thyroids, massive weight gain or loss or other long term health issues. So it's a vicious cycle and a lot of parents are at a loss on how to properly treat their children for something they may have to live with for the rest of their life.
OK so, as a part of being involved in a couple different parent or support groups, I have learned recently that CABF is competing for $250,000 in grant funding in the Pepsi Refresh Contest. Their main goal right now is to work with the blogger community to help secure funding for bipolar kids through the Pepsi Refresh Contest. So basically each time a blog like mine gets read and voted on, it helps CABF get closer to their goal of winning this grant. Having a grant like that could really help these kids out as well as helping the organization get the word out about advocating and education. I want Jake to be able to feel good about himself and know that what he has is something he can control, not something that can control him. I also want him armed with as much knowledge as he can have. He's only 11 now but soon will be a teenager, then a young adult where I won't always be there to advocate for him. He won't always be in a setting or situation where he will have an aide or where his day is goverened by an IEP.
Here is the actual release from CABF about their entry.
HELP CABF WIN $250,000 From Pepsi
CABF is in the running for a $250,000 grant from the Pepsi Refresh Project this month.
Winning this grant would transform CABF's ability to provide vital information and support services to children and families living with bipolar disorder and depression.
We can't win without you-- and you can help with just one minute every day. Winners are decided by total votes cast by Internet and text message votes throughout the month of November.
Sign up for a daily email voting reminder at http://www.bpkids.org/pepsi
and if CABF wins, a chance to win 1 of 3 iPads.
Vote today, ALL THREE WAYS, and every day in November:
Vote Online: Go to http://www.refresheverything.com/CABFhelpsmorekids. This will take you to the CABF Pepsi voting page. Click "Vote for this Idea". Register once and then you are all set.
Vote on Facebook: http://tiny.cc/cabfhelpsmorekids. The first time you vote via Facebook, you'll be asked for permission to access your information. Click "Allow". This will take you to the Pepsi Refresh Vote & Share application. You will see CABF's project below the search bar. Click "Vote for this Idea". (Be sure to click "share this idea" to encourage your friends to vote for us on Facebook. Do this every time you vote!) If you do not see our project, "type CABF" into the search bar.
Text your Vote: Text 104174 to PEPSI (73774) (Normal text rates apply).
What else can you do to get more votes for CABF?
•Bookmark our voting pages: http://www.refresheverything.com/CABFhelpsmorekids &http://tiny.cc/cabfhelpsmorekids. We need you to vote every day in the month of November. Anyone age 13 or older can vote. (Feel free to vote for other projects as well -- just not for any other projects which are also requesting a $250,000 grant).
•Tell your friends on Facebook by clicking this image: on the right hand column of the CABF voting page.
•FORWARD THIS EMAIL TO ALL YOUR FRIENDS, along with YOUR PERSONAL MESSAGE asking them to vote for CABF every day. Remember to ask your kids and their friends to vote.
•Print out flyer's and cards which you can give to friends. Hand them out at meetings, sporting events, etc.
Don't think you'll remember every day? No problem! Sign up for daily email reminders for a chance to WIN AN IPAD! If CABF wins the challenge, everyone who registered for a daily email reminder will have a chance to win one of three iPads.
Winning a $250,000 Pepsi Refresh grant would truly transform CABF's ability to provide support, information and hope to thousands more families.
WE NEED YOUR VOTES. REMEMBER - VOTING IS AS EASY AS 1- 2 - 3.
VOTE EVERY DAY, EVERY WAY
So take a minute to go check this out. Help me aide CABF in their quest to win this grant. I am also going to start working on some thing more local based in my community and do whatever I am able to do to get advocacy for my child and education for the public where he is supposed to grow and strive.
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