Navigating life with a teenager….who happens to have bipolar disorder

Posts tagged ‘N.A.M.I’

Diving Off the Deep End of the PEER

 

I found out recently that people in my life, both friends and family, feel that I am a bit of a know it all.  I could have been offended at this knowledge, but surprisingly, I wasn’t.   I personally don’t think anybody could be a true know it all, but I did think I knew a lot……….a lot about myself, my life, my kiddo’s life and our journey.  I knew these things because I had opened my mind and embraced my ability to learn.  This week I tested that ability and embarked on an adventure that would drive me to seek a deeper understanding of myself and my willingness to use that knowledge to help others.  Over the course of the week I learned more about things I thought I knew and I learned about things I didn’t realize that I didn’t know.  Most importantly, I learned about sharing my experiences in an effective way, instead of an intrusive ‘know it all’ way.

willing to learn

 

One of the beautiful aspects of the state of Georgia is that it’s Department of Behavioral Health and Developmental Disabilities is one of the pioneering agencies in the field of mental health services…..specifically, in Peer Support Services.  For many years there have been adults working in the position of a Certified Peer Specialist in the fields of mental health and addiction recovery.  After years of advocacy for both families and youth, there are now emerging groups of Peer Specialists that are specifically centered around youth living with these challenges and parents of people living with these challenges.  This week I joined their ranks and completed my training to become a Certified Peer Specialist-Parent.

What is a Peer Specialist?  We are people who have ‘been there and done that’.  We are people who can use all of the knowledge we have gained, the experiences we’ve had and, most importantly, the emotions we have felt to provide support to others who are walking the same path.  We are the people who will ask “How are you?” ……and then listen to the answer without hesitation or judgement.

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At the beginning of the week, I felt strong in the knowledge that I possessed all of the skills I needed to be the best Peer Support Parent possible.  What I learned, after lots of tears and self reflection, was that I don’t need to have all of the answers…… I don’t need to fix everyone around me…… I should simply be there when they need someone who understands.  I also learned that I have been drowning myself in service to others, always feeling that just because I have the ability to do something means I have to.  It was eye-opening for me to realize that I can take a breather from other’s lives to focus on myself and not feel guilty……..and that’s ok.   I didn’t learn this from the curriculum,  power points or exams…..I learned this by walking in the door every morning to 20 people who understood me before they even knew me.  I learned this by having virtual strangers sincerely asking me about my well-being every morning.   I learned this by having these strangers become caring friends by the end of the week.  In my daily life, I have a wonderful ‘mom’ friend who gets me, I have supportive friends at NAMI who get me, but having this large group of peers surround me and envelop me in kindness and understanding every day this week was a life changing experience.

As parents of special needs kiddos, we live our lives for our children and families first…….and then we love to educate others about what we know.  I have been doing this in an effort to make this world a better place for my child and others like him.  For a long time I felt that I was fighting this war alone.   I didn’t realize that by doing this to the extent I do, I am stretching myself thin.  I know I spout about self-care to others often, but I rarely follow my own advice.  I find it funny that it took me taking a class in an effort to help others to teach me to help myself.

Just goes to prove that this world is full of things that I don’t know. So I thank my teachers this week, all of my peers who taught me that’s it’s alright to care for myself and opened my eyes to the fact that I’m not in this alone.  I have warriors by my side.  Alone, I might be able to change the world, but I will burn out quickly.  As a group, we can give each other strength and a little bit of relief that we can take on the world together…….and go so much farther in our efforts.

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It’s Not About Being Selfish…..It’s About Self-Care

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“If you don’t tell me what’s wrong, I can’t help you find a solution.”…..I have found myself saying that to my son a lot in recent months. As parents of children with special needs, we tend to always be on the search for solutions to our kiddos challenges…..but how often do we search for solutions to our own challenges?

One of the things that has helped me in recent years was finding a caregiver’s support group.  I am going to be honest, in the beginning, I felt guilty.  Up until then, my ‘alone time’ was grocery shopping by myself……but that was still doing something for my family.  Once I started going to support group, I was taking a couple of hours a month to do something for myself.  After a while, though, I realized that I wasn’t just doing it for me, I was doing it for everyone in my family.  It helped me to express my feelings to other people who understood what my life was like.  It helped me to relate to my son better.  It helped me and my husband communicate better.

There are so many of us that don’t have a great personal support system.  When our child was diagnosed with a mental illness or neurological disorder, many of our family members or friends simply didn’t understand.  Our child’s school didn’t understand.  There were even medical professionals that didn’t understand.  Once you are sitting in a room with a group of people who have been in your shoes, it can be a life altering experience.

If you are in a situation where you do not have a support system around you, it is important to find the support you need using alternate avenues.  There are many ways to do that.  I am listing a few links that can help you find resources or support groups in your area.  Please take time for you, so you can take care of them.

National:

NAMI

Mental Health America

Center for Parent Information and Resources

Here in Georgia:

Georgia Parent Support Network

have the courage to ask

The Power of the Share – An Experiment with Social Media

As I was scrolling through Facebook the other day, I saw a shared picture.  Like many I have seen before, it was of a teacher holding up a sign that asked for people to like and share their picture so their students would understand the power of social media.  This one was slightly different though, it also said “so they can understand that we all have the power to change the world”.  Do we though?  Does liking and sharing a post on social media allow us to change the world…….well, it could…..if people were actually paying attention.

Like many of you, I have seen these types of posts for years.  Almost all of them have traveled the globe with thousands of likes attached.  Never have I seen them with a message other than the initial like and share request.  It is easy for someone to hit that share button, but what if there was a message attached? Would they read it?

I have been writing this blog about parenting my child with a bipolar diagnosis for over a year now.  I started it to try to make a difference in society regarding mental health.  I would love to end the stigma that surrounds people with a mental health diagnosis and their families.  I would love to educate those who don’t understand our lives.  I have found that my blog is not quite doing what I intended it to.

I have a small, loyal group of readers.  Most of them understand this life and it helps to know they are not alone.  I am proud that I have reached some people who truly appreciate what I am trying to do here….but I wish I could reach more.  I wish I could break through to the teachers who have treated my son like he was more trouble than he was worth.   I wish I could break through to the health care workers that sat in their seats and whispered (loudly) about how horrible a parent I was because my son was having a meltdown.  I wish I could break through to the neighbor who doesn’t allow my son on his lawn because he feels that his mental health diagnosis is a threat.  The challenge is that I can’t break through those walls if the only people reading this blog are those in the know.  There is a saying I have heard many times within NAMI support groups, “You can’t know what you haven’t been told”.  Well, I am going to add “People can’t hear you if they don’t know to listen”.

I an effort see if I can get more people to listen….and to see if we can really change the world with social media…..I have decided to do a little experiment.  Facebook has changed the way this blog posts in recent months.  People used to click on the picture I connected with my blog and it would immediately open the post.  Now, it simply opens the picture with a link to the post.  I am putting a picture with this blog, much like those of the many teachers that are trying to get 100,000 likes.  If it is shared and liked, the blog link will be attached.  We will see if more people read because we are shared via picture on social media. We will see if people can see beyond the picture.  We will see if we can change the world and end the stigma, one like at a time.

SIGN

If you are a new person reading this blog post due to clicking on the link…..BRAVO!!! You are the type of person that just might help us change the world.  Please aid us in educating society so we can erase the stigma of mental illness.

*NAMI is the National Alliance on Mental Illness – for more information or to find a support group in your area go to:  http://nami.org/

 

The Choice is Up to You

Suffering

This past weekend, my husband and I attended an advocacy training class hosted by NAMI.  At one point in the training we were read sample stories, letters and emails in an effort to learn how to be more concise when reaching out to others.  One of the sentences sparked a short debate within the class, it was a simple sentence….and one I use often “My son is living with Bipolar Disorder”.  When we were asked what stood out to us in the letter, I cited this sentence because they used the word living instead of suffering.  The word suffering has become all too common within the mental health community and there are many of use that would love to ban it all together.  There were others in the class that did not agree and stated that by erasing the word from our stories, it lessens the struggle we have all gone through.  Here is why I no longer use the word suffering in my son’s diagnosis:

My son has wonderful days. Most of the time, he is a happy and healthy 15-year-old boy.  Is he different? Yes.  He has to take multiple medications daily, he has to see doctors more often than most, get blood work done more often than most, and he needs to recognize when he is in a situation that may cause him lose control of his emotions.  These are all things he is learning to do very well……better than a lot of teenagers, if I do say so.  Does he have days when he struggles; when the highs and lows of bipolar disorder are so overwhelming he feels out of control?  Of course, that is the nature of the illness, but I feel the good days out-weigh the bad.

I believe true suffering is a choice not a diagnosis.  I have met people diagnosed with cancer, living with the horrible symptoms of their illness every day, but looking towards life with a positive attitude…..I have also met people with cancer who choose to let the symptoms control their life and their mood.  Same illness, same symptoms, but different attitudes had a huge effect on whether or not they emotionally suffered. Mental illness is no different.

People with mental illnesses have days where their world can be turned upside down…….and their families have those days, too.  It is how you pick up and move on to the next day that determines if you are choosing to suffer through the illness or live with it.  I have made a point of telling CJ that he is not bipolar, he is diagnosed with bipolar disorder.  The illness does not determine who he is or how he is defined.  Only he can determine that.  In the same sense, the illness does not determine whether he is suffering or not…..that choice is up to him.

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NAMI is the National Alliance on Mental Illness – a national organization that advocates, educates and supports people with mental illness and their families. For more information go to: https://www.nami.org/

A Little Shellfish, Not So Crabby

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At the end of our NAMI meetings, one of the things we go around the room to ask is ‘What will you do for yourself in the coming weeks?”.  This is an important question.  Caregivers tend to forget to do things for themselves when their focus is on their loved one with challenges.  The things we do for ourselves help us to reduce the stress of our lives.  Being a little selfish is ok.  Helping ourselves, in-turn, helps our children. That statement goes for ALL parents, not just those with special needs kiddos.  Unfortunately, it’s a statement that I forget…..a lot. When it comes to the end of our meetings and that questions is asked, I usually have to search for an answer.  This week, I did 2 things for myself.

The first one was my hair.  I know, that may sound silly….but in my life, spending a day in a salon is not something that happens very often.  Not only did I get my hair done…..I had it colored pink.  I have done pink highlights for a few years now….but this time I went all in, and it made me so happy.  Every time I look in the mirror, I smile.  Isn’t that what self-care should do….make us feel better? Well, I feel better with pink hair. I know my grandmother will be disappointed, but she is not the one in the mirror looking back at me every day…..and it is that person who I need to make happy. We forget that sometimes….that our happiness is important.  We worry about what others will think….of us, of our kids, of our lives….but what matters most is what we think.  Do you like yourself?  Are you teaching your children to like themselves? Is your life bringing you joy?  These are the important things to remember.

pink hair

No, this is not an April Fool’s joke. 🙂

 

The second thing I did was take a class on suicide prevention in teenagers.  I know that may not sound like self care…but it actually makes me feel good to learn new things….any new thing.  I took the day off of work, my husband took on the drop off and pick up duties for my son and I left for the day…..to learn ways to help other kids in need. If that’s not a win-win, I don’t know what is.  I have spent so many years learning everything I can about mental illnesses and neurological disorders in children to help my son.  It makes me happy to use that knowledge to help other children and their parents.  This blog was the first step….and now I am getting ready for a few more steps in that direction.

I always say it is important to teach our children that they are not their illness….they should not let their illness define them.  They are so much more than that…..and so are we.  We are not just parents of special needs kids.  We are human beings that need to be a little selfish every once in a while….and that’s ok.

What will you do to take care of yourself this week?

 

*NAMI is the National Alliance on Mental Illness – To find a NAMI support group in your area, go to:
https://www.nami.org/

The Suicide prevention class I took was called Lifelines and it was provided by The Society for Prevention of Teen Suicide.  They also offer a free online certification training for educators on their website:

http://www.sptsusa.org/

The Blame Game

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One of the things being a part of a NAMI support group has taught me is to see a person and their illness as two separate things.  I think, in a way, I have always tried to teach CJ this by reminding him “You are not your illness”…..but sometimes I have a hard time grasping the concept when he is out of control or simply being completely disrespectful.  Throw in the challenge of differentiating normal teenage behavior from bipolar behavior and sometimes I am at a complete loss in regard to understanding my kid.

One challenge we have been dealing with for many years is CJ accepting responsibility for his actions and blaming others for outcomes that he could have prevented.  For example, we have been looking to move into the next county over from us.  Since CJ has started his new school, I have been spending about 2 1/2 hours a day commuting back and forth to his school.  One county doesn’t seem like a big move, but by doing so it will cut my driving time in more than half.  It will also put us closer to our church, where my husband is heavily involved and closer to the highway for his commute into the Atlanta area for work.  To make this change, we have to put our current house on the market. CJ is actually very excited about the prospect of moving, however, to put our house on the market, he has to maintain his bedroom and stop damaging walls.  Instead of stepping up to do what he needs to, he gets angry at us for not making this change happen fast enough. He simply won’t take responsibility for his actions that have caused this delay.  I have even offered to clean his room and maintain it daily…..but he won’t have it.  The thought of me invading his space sends him into a tailspin.  So we seem to be at an impasse trying to keep him stable enough emotionally that we can move forward with our plans.

This has been an ongoing problem for us.  I am constantly in a state of frustration trying to figure out ways to teach him to accept responsibility for his actions while still understanding that placing blame on others is a trait of many people living with bipolar disorder.  The inability to see the cause and effect of your own actions can hinder every aspect of your life…..especially relationships and work.

So, in NAMI, our first principle of support is “We will see the individual first, not the illness”.   I have found that one of the best ways to do this is to try to educate CJ about his illness…..and some of the road blocks that it tends to place in his way.  I hope by showing him ways to move past these roadblocks now, it might help him in his adult life…….or it could back-fire and he will use what I teach him as a crutch (sometimes you just have to take the risk).  Either way, I feel I need to educate him just as much as I try to educate others.  We have to remember that just because our kids are living with mental illness, it doesn’t mean that they understand their actions any better than we understand them.

 

*****On a separate note, WordPress has informed me that today is my 1 year anniversary of starting this blog.  I know it has been a bumpy road these past few months, but I want to thank you for sticking with me.  If I have helped anybody understand their loved one better, or helped to educate those in the dark about mental illness, then this blog is fulfilling it’s purpose.  CJ and I thank you for reading. *****

 

 

*** NAMI (The National Alliance on Mental Illness) provides support to families, caregivers and people living with mental illness.  To find a support group in your area go to http://www.nami.org/

My Unexpected A-Ha Weekend

aha moment

As I awoke, unusually early for a Saturday, I felt a bit nauseated.  I was approaching, what I considered, a challenging weekend.  You see, for some time now I have dealt with mild social anxiety.  It has become especially difficult for me since CJ’s challenges have gotten harder.  I have come to the conclusion that it is directly connected to CJ’s diagnosis.  My theory is that, for most people, home is routine, home is monotonous and they look outside their door to find something to spice up their life or to experience something different in their world.  For us, life at home is unpredictable.  When I wake up each morning, I have no idea what to expect from my day.  When you live like that, who wants to face even more unpredictable situations outside your door?  Not me.  I tend to stick to what I know…….the stores I shop at, the restaurants I eat at and the friends I spend time with.  Putting myself into new situations can sometimes make me physically ill.

For the past year and a half, my husband, Michael, and I have been a part of a family support group for caregivers that is part of the NAMI (National Alliance on Mental Illness) organization.  It has proven very helpful for us and we have a nice group of people locally that I am very comfortable with.  In an effort to help others, we had decided to sign up to train as facilitators so we would have more people able to run the meetings in the event that someone was ill or out-of-town.  I didn’t think much of it when we initially inquired about the training.  Last week, we received an email that there was a training class happening about an hour from where we lived and they had an opening.  So, there I was, Saturday morning, nauseated and driving along hwy 20 feeling like I was going to be sick.  Little did I know that this weekend would not only be full of new challenges….but give me a lot of insight on how lucky I am.

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Couldn’t resist inserting an actual A-Ha moment.

A-ha moment #1:

Throughout the weekend, our training was filled with scenarios and role-playing that reflected many situations that families with mentally ill loved ones deal with.  It wasn’t like I didn’t know all of these situations happen…..but the fact that they were written into a training class somehow made me feel different than just hearing it in a support group.  I have met people in similar situations that have gone through what we go through regularly and it is always comforting to know that there is someone out there like you.  What hit me this weekend, with this training class, was that there isn’t just ‘someone’ out there like me….there are so many people out there living in these situations that they created a training scenario about it. I don’t know why it took this class for me to come to that realization.

A-ha moment #2:

By lunchtime on the first day of training, my nausea was gone and I was quite comfortable with everyone in the room.  Feeling included with other people has always been hard for me.  Even as a teenager, I didn’t feel as though I was ever a ‘part’ of a group.  I had friends and was acquaintances with many people in many different ‘cliques’, but was never a true part of any specific one of those cliques.   Even with family, I can sit at a dinner table and feel as though I am not seen or heard.  I have just always been so much better one on one than in a group.  I am quickly finding that I can feel at ease quickly with just about everyone I have met through NAMI.  I don’t know if it is because we all have a story, we all have a life that others may judge…..so we don’t judge each other.  It’s like a permanent ‘safe zone’.  From my regular support group, to the NAMI walk, to this training class, even though I have started out nervous, I have felt comfortable pretty quickly.  Kind of like a fraternity or sorority, you can meet someone new, find out that they are involved in NAMI and there is an immediate bond and understanding.  It may have taken me until the age of 39….but I think I have found my ‘group’.

A-ha moment #3:

One of the topics that came up a few times this weekend was the fact that NAMI helps so many people feeling lost and lonely after losing friends and family that don’t understand what you go through when you are caring for someone who is mentally ill.  This was brought up on Saturday in conversation, but I didn’t think about it much in the context of my own life.  Saturday evening, after class was done, I had planned on spending the night at my best friend’s house as she lives close to where the class was being held.  I got there at 5pm and we started talking…..I don’t think our conversation ended until we fell asleep at 2:30am.  I love nights like that with her, where we can talk about anything and everything, but I think I sometimes take for granted how lucky I am that I have a friend like that.  In the car the next day, I started thinking about the fact that she has been in my life and CJ’s life since he was a baby. One of my other best friends has been a part of our lives since before he was born. They are my biggest cheerleaders and supporters.  As I thought about it more and more, I realized that I have not lost anyone in my life due to CJ’s illness the way that so many others have.  At first I thought it was because I am lucky that my friends accept CJ’s illness. As my drive home wore on I changed my mind as to why. I think it has more to do with my acceptance of CJ’s illness.   I have never hidden our struggle.  There may not be many people in our lives, but most of them have been on this journey with us. They don’t just know the good, happy, parts of our lives…they know all of it.  They share the highs and lows with us.  If anything, my vocalization of our life has brought more people into my world.  The more people, the bigger the support system.  I have gained better friendships with people from high school, people from church, people from social media….heck I even now have a friend overseas that I consider a part of my support system.  I don’t think I would have been able to have gained such a great group of people and surrounded my family in so much love if I hadn’t been willing to accept CJ’s illness and educate others. This realization has made me feel like, somewhere along the way, I made a few good decisions in how I handled the challenges life has thrown at us.

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So after 2 exhausting and emotional days……..with a long night of girl talk sandwiched in-between, I am now a certified NAMI Family Support group facilitator.  I am also now planning on training to be a NAMI Basics class teacher, to help other parents of kids and teens understand more about mental illness and navigating the educational and health care systems.   This weekend has taught me that I still have a lot to learn…..but at least I can take what I do know and help others in the best way I know how.

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To get more information about NAMI or to find a support group in your area, please go to

 http://www.nami.org/”>