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

Posts tagged ‘caregivers’

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.

howWally

 

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

If-we-neglect-taking-care-of-ourselves

“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

A Light In The Attic

face-your-fears

 

When we moved to the south three years ago, there were definitely a few fears I had to face.  I was up for the challenge and excited about what lay ahead,  but being the northern girl I am, there were little thoughts nestled in the back of my mind about what I was getting myself….and my child into.

First came the big fears.  My son, CJ, had a hard time being accepted by his peers….and by adults, for that matter…..when we lived outside of Albany, NY.  Would he have trouble with this southern move?  My husband and I are progressive thinkers in the matters of life, love and faith.  How would WE be accepted into this more conservative society?  It didn’t take long for those thoughts to be quieted.  Within months, CJ had found a couple of true friends and my husband and I had become a part of a wonderful circle of very accepting people.

Then came the silly fears.  Georgia has big bugs….and snakes….and tornadoes.   I have to say, I have not seen one snake near our home since we lived here (I did see one in the lake down the road, but it was far enough away that it didn’t even phase me).  There has only been one bad tornado….and it was about fifty miles away.  The bug thing I am still working on.  Two and a half years since we moved into our house and I still have not ventured into the attic for fear of an encounter with a brown recluse spider. In three years I have learned to face my fears of the unknown (well, most of them anyway)…..and this week I triumphed over another one….home schooling my son.

Since elementary school CJ has struggled with being in a classroom.  His anxiety has gotten so overwhelming that he can become physically ill….nausea, vomiting, chest pains.  He was afraid to let teachers know that he understood the work because he didn’t want to be called on.  If a teacher reprimanded him in front of the class, he carried it with him every day.  His struggles with his learning disabilities and sensory processing disorder has hindered the learning process….especially when he has come across teachers that don’t understand working with challenges. This has all been a part of living with bipolar disorder.  This has all been part of our lives since the first grade.  This has all been a part of our lives until we decided enough was enough.

In June, my company was forced to do some layoffs…..me being one of them.  I seized the opportunity to change some of my life goals by starting my own company.  I did so with the assumption that my son would be attending the private school we enrolled him in last winter.  Little did I know, on his first day of school that would all change.

We knew going in, that this was a Christian school, but I specifically asked what views they held upon enrollment.  I was told that the curriculum didn’t hold any specific point of view and that they had students from all faiths attending.  They held up to that for winter and spring semesters.  Not so much this year.  On his first day, CJ was told he was a sinner by his history teacher because he believes in evolution and that the world is millions of years old.  He also got in trouble after that history teacher said God wrote the bible and my logical thinker son said…”Um, no. The followers of God wrote the bible…..that’s why each book is named after them.”.  Later in the day he encountered his new biology teacher who literally struck fear into one of his classmates as she reached across the desk to hit him with a yard stick.

As soon as CJ got in the car at the end of the day, he told me what happened and said, “I am never going to be able to speak in that class because I am sure I will be hit eventually”.  Looking through my son’s notes that day, the only thing on a page from that class said DO NOT SPEAK….underlined five times.   Needless to say, he was a nervous mess.  That night, he woke up from a severe panic attack,  sweating, crying and shaking.  It took him a while to calm down and get back to sleep…….and then he woke up the next day the same way.  The next time I dropped CJ of at school, I remember thinking “School should never have to be a place you are afraid of.”.

By Wednesday of that week I had a long conversation with my husband.  What if I tried to home school him?  I know we had attempted on-line schooling before, but what if I created a curriculum that spoke to him? So, I embarked on a new adventure….trying to build the right curriculum for my kiddo.  Something that would teach him life skills as well as academic ones. Something that would engage his interests while educating him.  Something that would make him want to learn more.

CJ and I had a long conversation about it and I set forth the rules we would have and the schedule we would follow.  We determined to keep the same school schedule he had at the private school, four days a week of class and Fridays would be set aside for any catch up work or course work to help him understand something he is struggling with.  He would also be expected to pick some type of community program to volunteer with.

This week we started.  As before, I had fears going in.  I began with quite a bit of nausea, myself…especially because I didn’t have a whole lot of time to figure out which curriculum program we were going to use….so I created what I call a Frankenstein program…..  little pieces of different programs and some of my own.  I wanted to start by September, so we began with five subjects instead of the six I planned.  I am still working on the curriculum for history and will add that in the next couple of weeks.  This year, our subjects are Oceanography, Popular Literature(focus on comic books and manga), Sign Language, Accounting/Economics and Life Skills (my answer to Home Ec).  Each day I allow CJ to pick which subject he wants to start with.  Our classes are a mixture of reading, lecturing and hands on work so I can see how he learns the best.  He has not made one complaint.  He has completed every task I have set before him.  He even woke me up early on Friday asking me why I let him sleep too late because he wanted to start school.

After the first couple of days, I heard CJ on a telephone call to his grandmother.  He made a comment that struck me.  He said “I understand what I am learning because when I ask a question mama takes time to explain instead of just reading the same thing a second time like all my other teachers have done.  I mean, if I didn’t understand it when you read it the first time, how is reading the same thing a second time going to make it any better?”.  Because he and I are one on one, I have the time to explain things in detail to him and to answer all of the questions he may have, which is something his teachers never had time to do.  I think this will be the key to our success.

So, we are only one week in….but it has been an amazing week.  I wonder if it’s about time I faced another fear and venture into the attic….maybe I’ll leave the light on for a while first, just in case.

light in the attic

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.

world-is-full-of-suffering

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/

Walking On Eggshells Will Just Hurt Your Feet

walking on eggshells

 

In the past few months, I have been coming to the realization that I sometimes revert back to the ‘eggshell’ behavior of my past.  Not all the time, but in certain moments, when I know the kiddo is in a bad place, I have been letting him have his way.  Why have I been doing this?  I am not sure.  Maybe it is because I have been trying to get my own head on straight lately. Maybe it is easier than dealing with a blow up.  Maybe I have been trying to be ‘nicer’ to help repair the rough relationship he and I fell into while he was trying to home-school last semester.  Whatever the reason, I am over it now.  I am tired of tiptoeing.  Just to prove it, I had another one of my ‘meanest mom in the world’ moments a couple of weeks ago.

Since starting his new school in January, our mornings had been getting worse.  He was refusing to wake up and get ready.  The private school he is attending only has a 4 day school week….but he was missing 1 or 2 days every…. single….. week.  In the state of Georgia, it is the parent’s responsibility to make sure their child is complying with the school attendance law.  If your child is absent a specific number of days, they call a meeting.  If they continue to go miss school, parents can be fined (or go to jail, although I have never heard of that actually happening). In CJ’s case, his medical issues can be brought up in the initial ‘meeting’ and they drop the whole thing.  For kids that don’t have medical issues, the only way to take the consequences off of your plate and hand them over to your child, is to file a complaint against them yourself.  I kept thinking about this over the past few months.  CJ was turning 15 this month….I thought it was about time for him to have to take legal responsibility for his poor decisions.

A couple of weeks ago, after a particularly manipulative morning argument, I told CJ that if he did not go to school that day, I would be heading out to the courthouse to file papers.  He didn’t believe me……so he stayed home. Since I work from my home office, he didn’t venture out of his room all day.  When I logged off my computer, I called out that I was running an errand and left the house quickly.  I drove straight to the courthouse and filled out the paperwork needed….I didn’t want to stop anywhere in between, I wanted to maintain my determination. They gave me a court date and I headed home.

While I was driving home, I got a call from the bonus kid to pick her up from school.  When I got home, and Megan was with me, CJ assume that the ‘errand’ I ran was to get her.  He had a ‘know it all’ smirk on his face when he said “Ohhhh, that’s where you went”. I replied “You know exactly where I went and your court date is on the 12th”.  I never saw somebody’s face change so quickly (and given that I have a bipolar child, that is saying a lot).

He spent the next couple of weeks thinking that he was going to miss his birthday because he was going to jail.  My real mean mom moment came when I didn’t correct him. Up until the day of his hearing, I let him believe that there was the possibility of him going to juvenile hall. I knew that this hearing was just a part of an intervention program that our county had put in place….but I let him think otherwise.

The judge was soft-spoken, but tough.  CJ shook through the entire thing and promised, emphatically, that he would most definitely go to school……and he has. Last week marked the first time all year that he got up and went to school every day. It also marked the first week in years that we didn’t fight every morning.  He got up early, got dressed and was out the door on time every day.  He knew that manipulating me or fighting with me wasn’t going to help him…..it was out of my hands now.

As parents of kids with disabilities……any disabilities….we sometimes forget to step back and ask if the ways we ‘help’ our kids are really helping them at all or are they hurting them….and us, in the long run.  When CJ was little, his developmental coordination issues hindered him from easily tying his shoes.  I thought about it and came to the conclusion that it wasn’t a big deal….it wouldn’t hold him back in life.  When all else failed, there would always be slip-ons.  I need to start doing that again….in every aspect of his life.  I need to start looking outside our house again and help him make decisions from the world’s perspective….not my mama bear, over-protective….sometimes, over-exhausted point of view.  Knowing that refusing to go to school would hurt him was an easy one….but there are other decisions that we make on a regular basis that aren’t as cut and dry.  For kids that deal with bipolar disorder, the slightest thing can send them into a manic tailspin.  Should I not say something that might upset my child?  Should  I not push him to clean his room or take a shower because he will flip out about my ‘controlling’ him?  Should I let him live with is illusion that the world revolves around him?  Those seem like easy questions to answer, but when you live with a child that could snap at any moment….it isn’t as easy as you think.  My answer to all of those………he is eventually going to have to learn to live by society’s rules. Society will not walk on eggshells for him…..why should I?

 

 

The Blame Game

dont-indulge-the-blame-game

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/